My husband suffered from a mild adverse reaction to fluoroquinolone antibiotics three years ago. He went on to develop psoriatic arthritis from his floxing approximately one year later. Psoriatic arthritis is a painful skin and joint inflammatory condition. He avoided taking any medications for this condition until just recently.
This past week he saw our rheumatologist who prescribed a brand new drug that has just come out on the market to treat psoriatic arthritis. The drug is called Otezla. The doctor told him that this medication was different than all of the other medications used to treat psoriatic arthritis because it does not suppress the immune system. He told him that the only known side effects that were seen in trials were diarrhea (which is supposed to get better the longer you use it), headaches, indigestion, nausea, vomiting, stomach pain, sinus problems and severe depression. The depression is so severe though and include suicidal ideation.
The doctor suggested that the Otezla, for the most part seemed harmless, and its side effects seemed nothing compared to all the other toxic drugs out there to treat this condition. So, my husband said he would give it a try and started the drug, three days ago.
Individuals prescribed this drug begin at a lower dose, 10 mg and titrate up to near a 100mgs within about month. Currently, because Otezla is so new, patients can only get the drug from their doctors. Physicians are being given one month trials of the medications from the pharmaceutical company to offer to their patients. If it works, the patient then orders directly from the manufacturer. Pharmacies are not distributing it yet.
My husband looked at the drug literature that came in the packet but it really did not give much information since it is just now being distributed out to the general market. The only thing that the literature can report is what was seen in the study trials and for the most part it just confirmed what the doctor had told us in clinic. The technical information was listed. The mechanisms of how the drug worked, how it is excreted and metabolized was in there but my husband did not understand much of it. Like a fool, I did not take the time to read it because I am dealing with my own health issues now.
The first day my husband used the Otezla, he had no problems, no side effects. We thought great, this is going to work without all the risks of the other drugs.
The second day he had to take two pills, one in the morning and one at night and again. Again, he did just fine.
The third day he woke up feeling very tired and began aching more than normal. Nevertheless, he decided to continue taking the drug. He took one pill in the morning and by that night he was really hurting all over; to the point that he was having a hard time walking and moving. Like a fool, he said he wanted to give it one more day and so he took the next pill.
That next morning, the fourth day, he could barely get up and was having severe pain in most of his tendons. He did stop taking the drug, but it was already too late. By that evening he could no longer move his right wrist without severe pain; pain that brought him to his knees. He also noticed his blood pressure was steadily climbing and his heart rate was abnormally high even at rest. The diarrhea then began with the stomach pain and now all his muscles were painful to touch. He was in bad shape.
He got on the internet and began searching for patient reports of side effects for Otezla. Lo and behold, there are already sites focused on Otezla side effects, though they are difficult to find (here, here) with all the marketing hype around this drug. Page after page on the search shows nothing but positive PR and how wonderful this drug is. He found reports tendon tears, all over muscle pain and nerve pain along with a host of what sounds very similar to post fluoroquinolone reactions – floxing symptoms. He also found a study on this drug that talked about this drug being shown to cause Achilles tendon ruptures and tears as a possible problem that should be listed in the literature but has not yet been put in there*. So, I said get me the drug literature paper so I can read it!
OMG! This drug is almost identical to the fluoroquinolones. Its active ingredient is Apremilast, not neldaxic acid. Both drugs use similar pathways. It has warnings not to be mixed with steroids, NSAIDs, Rifaximan and Phenobarbitol. Great, my husband was taking NSAIDs along with Otezla.
The paper then goes on to explain that this drug does not suppress the immune system like the other ones on the market, though it suppresses an immune activator called PDE4 (phosphodiesterase). However, many of the documents I read state that they do not know exactly how or why it works in half of all people or even how use it to treat psoriatic arthritis; meaning they really do not know what this drug is truly doing at the cellular level to the people taking it. DAMN IT!!!!!
Worse yet, in many using Otezla, it may cross the blood brain barrier and causing depression, psychosis and even suicidal thoughts and tendencies (sound familiar, Levaquin!) This drug literature was very similar to the early warnings for fluoroquinolones.
This new chemical, which is the active ingredient in this drug known as Apremilast was based on the thalidomide molecule, but it supposed to work differently. They are marketing it for autoimmune disease and if it goes over well they will expand on it to try and come up with better treatments for other autoimmune diseases like RA, Lupus, Crohns, etc…
Needless to say, my husband has stopped the drug but is now floxed even further. He did go to the ER because his wrist was so bad. In the ER, they determined that he has a swollen and possibly torn ulnar nerve that is damaged just before the wrist. His Achilles tendon is now flaring today as well and he has been put in braces for both wrists and ankles. He is in terrible pain and on Oxicodone for the pain because he has been told not to take any NSAIDs from here on out due to after effects of Otezla.
Our lives where shattered when my husband, my daughter and myself took Cipro for a stomach infection three years ago; a stomach infection that turned out to be nothing more than a virus. I was hit the hardest. My daughter had a moderate adverse reaction and my husband only mildly. My daughter and I have gone on to develop spondyloarapthy with Crohn’s and many other fluoroquinolone related problems. My husband went on to develop psoriatic arthritis but, for the most part, he could function with little problem. Now three years later and another drug, similar to the fluoroquinolones, has once again hit our family and shattered what was left of it. My husband is now very bad and we do not know if or when he will recover. This is very scary. I wrote this story to warn other floxies, individuals suffering from post fluoroquinolone reactions, not to take this drug.
*At the time of publication, Hormones Matter does not have access to that study.
Kim I was on otezla for 3 weeks I have Spondylitis. I felt nothing for one week from the drug then all hell broke lose. Severe fatigue joint pain felt like I couldn’t get out of my own way. I ended with a heart attack on fourth week . It has been 11 months since I stopped Otezla l still having problems Sores on my tongue fatigue shaking feel like I got one foot in the grave . My tendons have started ripping in my knee and ankles. It was great to see this website because everything I have read doesn’t tell all side effects. I hope everyone stops this Medication before they have bad side effects. Unless your one of the lucky ones and it helps.
So here I sit reading all these comments because I’ve been searching for side effects of Otezla.
I’ve taken Otezla now 3 mo. With in this last week my lower extremities have felt so weak. Now just to walk I have SEVERE pain in both legs, as well as hip and groin areas. My chest seems tight. I’m trying to talk myself out of going to the ER But after reading your and a few others comments. I’m so scared something is so wrong. I wake up in a full blown anxiety attack most days. But if I go to the local ER they’re just gonna look at me like I’m crazy when I explain how I feel…? But I can’t sleep even taking my cyclobenzapr most nights from the pain. And my hands swell and are so stiff in the morning it’s hard just to get my fingers to move.
Otezla took it for psoriatic arthritis but in and after 9 months it caused a sinus infection so bad I had to get sinus surgery it also caused inflammation in base of my skull so severe causing a massive tumor 2 centimeter in size, that almost killed me I still have nerve damages and pain called trig neuralgia worse pain known to human kind ….I’m being treated at md Anderson hospital.
I took Otezla for 1 month. After the first week I called the doctors office and spoke to the nurse, I told Her something is not right with my hands I can’t close them and my fingers get stuck and I have to straighten them out with my other hand. The pain is excruciating. It feels like someone took a hammer to my hands. Sometimes I get up screaming with pain. I am in constant pain . She told me to keep taking it, it will pass. So I kept taking it. About 10 days in I became very depressed and I started to experience thoughts of suicide, but not like I wanted to kill myself, no it was in every thought like a fantasy. I remember I was at light in my car. It was a beautiful day and I saw myself getting out of the car and this gentle breeze felt so good against my face then i imagined how wonderful it would feel if I jumped off the bridge. I truly wanted it! I didn’t get out of the car I just fantasized about jumping. What brought me out was people started honking their horn apparently the light was green then red. People were upset with me and I was confused and scared. I went to work and told my sister. She was so scared after that she didn’t want to leave me alone . I was freaked out needless to say. It’s been almost a year that I stopped taking Otezla and I am still in constant pain! It’s getting worse. I still have the have some thoughts but they pass quickly.
LET ME BE CLEAR I NEVER HAD PROBLEMS WITH MY HANDS. NOW IT’S ALSO IN MY WRISTS ANKLES TOES AND SOMETIMES MY KNEES! If anyone can tell me anything please respond. I don’t have insurance so I have to live with this pain. I thought about a lawyer but i don’t like lawsuits. I need help. I can no longer do my job. I can’t brush my hair. I push through because I have to.
I have been taking Otezla for 4 months. It was prescribed by my dermatologist for psoriasis and possible PA. My skin is 90% clearer but my joint pain and stiffness are 100 times worse. The pain wakes me up at night. My primary doctor referred me to a Rheumatologist. The blood work that came back tested positive for Lupus. Now I am scheduled for 3 MRI’s next week. After reading all of the comments I think I will ask to be taken off of the Otezla and see if things imorove.
This is nuts. My rheumatologist told me they are opening up Otezla for the treatment of Behçet’s disease this year and started me on it. Behçet’s is an autoimmune disease which attacks the small and large blood vessels (vasculitis) of the body. I have been doing research trying to find any information about the side effects or drug interactions of taking Otezla and you are right about how difficult it is to find anything – still. I have been on this hell of a roller coaster for eight weeks and I have to stop. I have chronic pain in my spine, knees and shoulders. Since I started taking Otezla my pain has increased so much I can’t move. My hands hurt so bad that I can hardly type this. I can’t stand to cook or shower. I still vomit and get nauseated. I should not have been put on this drug anyway since I suffer from major depressive disorder, I pray I get my body back when I stop it because I can’t live with this pain despite taking large quantities of opioids. No wonder people commit suicide while taking it.
my brother took Humira and he had all kinds of side effects from it and when he started taking it you know this was 10 years ago and that was about the only one on the market and you know he said if you would have taken it now he would have use taltz or otezla. I just started taking otezla 2 weeks ago and I’m not having any side effects from it I mean except for maybe Leah some constipation you know some stomach aches other than that you know I haven’t had any issues with it and I was worried about either taking medicine and also to you know I’ve got hep C you know but I was cleared by my, gastroenterologist then it was safe for me to take it that user for people with Hep B that really have to worry about it and you know they checked my white blood cell count and it was fine so he was safe enough for me to take and I haven’t had any issues with my kidneys or anyting. I think if anybody is going to get on one of these drugs for severe psoriasis which I have and clearly you know the drug outweighs the misery misery I have to deal with everyday with this psoriasis in the pain in the discomfort that comes with it and the embarrassment. That you have to deal with when you have plaque psoriasis it’s not even a question I mean I want to get rid of this stuff so bad so I’m willing to take a chance with otezla and the chance I took clearly outweighs crap I have to deal with with psoriasis so yeah everybody is different not everybody is going to have the same side effects and this medicine might not be for everybody but you can’t really believe what somebody says until you actually go take the medicine or you’re willing to step up to the plate and take it for a significant period Of time. now you can’t just sit here and listen to every single person you know and in their experience with a medication and if you did that you know then you would never get on the medication. cuz you know people get paranoid and you know oh God will this person said that and this person said that you have to experience it for yourself you can’t just you know go on what somebody else says because everybody is different. If you got bad psoriasis you want to get rid of it use otezla
I was on Humira before but I was experiencing some neuropathic side effects. Decided to go Otezla instead and so far it’s been decent (1 1/2 months). I hit that wall of depression early on but I was expecting it and was able to understand where this fatigue and these morose feelings were coming from. Also experienced the rest of the spectrum of symptoms except I didn’t quite throw up. Came close. My posiasis has been kept mainly at bay but I have had some sudden bouts of scalp psoriasis that hit pretty hard then went away. I still feel a little sick and down for about 4 hours after each pill but if you read the literature that comes with your prescription you’ll see that it can take up to four months in some cases for the Otezla to be at full effect. Also, the symptoms take time to adjust to. For the majority of people they go away after a 3 weeks to a couple of months. If you can hang, then wait it out. Some people have experienced severe enough symptoms that they had to stop takin Otezla early. And that’s okay. Hopefully something else will work for you.
My husband took Otezla for 3 -4 weeks and couldn’t tolerate the diarrhea so stopped taking it. As he terminated it he began to experience severe tendon pain in his hamstrings and right shoulder. Has been taking Aleve to help with this, but now we are not sure this is appropriate. I’ve read many of these posts and am wondering if these eventually go away with time or is this permanent damage. I’d appreciate any responses or suggestions re helpful supplements etc
I have been taking Otezla for 3 months. It has helped so much!!! I had headaches in the beginning but have now subsided. I do have muscle pain in my thighs often. I am now going to have to try a different medication. My insurance company sent me a letter saying they will not pay for Otezla until I have tried all other psoriasis medications.
I’m sorry to hear about your situation. I also am in a similar situation. My Dr wanted to skip the Humara and go straight to the Oltezla. But, the insurance company wants me to do I believe it’s called Step Therapy. Try Humara 1st, then another med before approving the Oltezla. I have swollen bone marrow at L4/L5 causing me to not walk unassisted, it’s so bad that it’s affecting my pelvic bone. I feel your pain and concern. I pray that your Dr’s find a workable solution for you! God Bless!
I did forget to add, that a part of the reason the insurance is denying Oltezla is due to it being over $3,000.oo per Rx 🙁
I have taken Otezla for 9 months. I am experiencing fragile skin as if I am 80 years old. My forearms bruise with big purple blood spots and not even sure when or what I hit. My skin tears so easily and takes 3 or 4 weeks to heal. Never had this problem before Otezla. I am only 47. I am afraid to stop taking it because it is a build up medicine and it takes me 2 months to get an appt with my dermatologist. My skin is about 90% clear from the plaque but I still find new spots frequently. I spray them with Serivo and they are gone the next day. I don’t want to experience a major plaque outbreak and not have the build up part of Otezla. But this bruising/skin tearing has me concerned. Anyone else experience this?
I am so glad I found your comment.
I have been taking Otezla for 2 years for PA and psoriasis and it helped about 90% for both until I got my 2 dose of COVID vaccine!
My joint pain came back and Otezla only works at 50 % at best. I am so afraid to stop it because other meds have even more side effects!
I also experienced severe bruising on my forearms!
I am 56 and my arms look like 80 year old as I get dark red spots from almost anything I touch.
Both dermatologist and rheumatologist are not aware of this side effect but I am convinced it’s from Otezla.
I wish I would have seen this sooner. My lady is having extreme pain in her right leg. It is specifically in her tendons. She has been on full dose for one day and is literally in tears because her legs hurts so bad. We are going to discontinue this medication immediately.
I’m so grateful that I came upon this website/forum. I have been living with RA for 16 years except for a 5 year remission. I have only ever used Methotrexate and Ibuprofen & Tramadol as needed for pain. I was recently convinced by a Rheumatologist to “try” Otezla. She gave me a starter pack but told me to wait before taking it to see if my Insurance will give prior authorization for payment. After reading all of the above I’m going to give her back the starter pack and I will NOT be “trying” Otezla. I will keep each and every one of you in my meditations and send out vibrations of healing and peace for all of you. Thanks for sharing.
Started Otezla for Lupus, Behcets syndrome & sjoigrens syndrome. In Scotland & few have been given the opportunity to try such an expensive drug. Had side effects from hell, stopped & repeated after Rheumatologist pressure. Had stage 4 bone & lymph cancer, & 3 lots of sepsis shock that should have killed me, BUT – Otezla has given me more grief regarding pain & side effects than anything i have experienced! I suffer mostly with oral & genital ulcars & Otezla is meant to help but made them worse. I have extreme nexk, hand & lower back pain at present, had headache, nausea, diahhorea and drug strips your white cells. Stopped drug after only 4 days this time as i truly believe if kept going long term damage would occur. I felt a horrid high scary type feeling that i can’t describe, during the night. I think its best if it doesnt agree then STOP!
I was on Humira with a few successful months then my plaque psoriasis starting coming back worse than before. I then decided to start with Otezla, the first few weeks was amazing, skin began to clear up and felt great. Around week four I have severe lower back pain, then pain moved to my neck, then proceeded to my shoulders. Then at week five the pain was excruciating, I couldn’t lift my arms from the pain and could barely walk because of the leg pain and swelling. I needed assistance getting in and out of bed, as well as, getting in and out of the sitting position. I decided to stop taking the meds for a few day and the problems began to subside. I started it back again and the symptoms started again just like in the beginning.
The medicine would be amazing if it weren’t for the side effects, I value walking and being able to lift my arms more than having my plaques.
The pluses was weight loss and clearing of the skin within a few weeks.
I have been taking Otezla for almost a year, I had the normal side effects in the beginning, nausea, achy body, headaches.. that went away after the first week or two and my doctor even told me to just take one pill a day but I would say for the past 4 months now, I have been experiencing panic attacks, so much so I took a trip to the emergency room thinking I was having a heart attack.. since then it’s become the norm, the anxiety and panic feeling.. I have had bouts Of anxiety prior to this but very rarely and I knew how to control it.. this is now more frequent and mostly at night which is when I take the otezla. I’m not sure if this is related but I can’t think of anything else.. nothing has changed drastically in my life.. I’m thinking about not taking this medication anymore but I don’t know what to take for my psoriasis ☹️
I take it once a day at dinner and no longer have insomnia or panic attacks.
I feel the same way and have been googling to get more information and to see if my anxiety is caused by Otezla. I started 4 months ago and I feel very anxious. Have more people felt depressed and anxious since taking Otezla? I never suffered from anxiety prior to taking this medication.
I can only take 1/2 of the full dose pill once a day. Yes, I split the pill even though I was told not to. I don’t care this is what works for me. My severe scalp psoriasis is 80% better and the extreme (it was almost unbearable) itching and scratching are 90% better. I do not have RA or any other health issues nor do I take any other meds. I tried taking the full dose pill for a few days and had nausea and lethargy all day. This was only one in the AM. I dared not try taking another dose in the evening as I could not tolerate the lousy way I felt. So half of one full dose pill once a day works. I’m ok with that.
Imagine that, an MD believing a drug rep that Otezla doesn’t supress the immune system. The depressogenic profile of Otezla is amazing. It appears the FDA, or the hand maidens of Big Pharma have approved a drug that will be removed from use within a very few years. The side effects are just too terrible.
Do you have links to articles about the mental health effects? I am struggling to find them. I’ve been on this drug six months now – I’ve had episodes of depression in the past, however I am now at rock-bottom, I have anxiety for the first time ever, I can’t stand being around people (normally I want company all the time if I’m low!) and suicidal thoughts to go with it. Unfortunately I’m pretty much out of options for PA – react badly to sulfasalazine, hydroxychloroquine, methroxate oral and injected, and 3 different biologics – so I’ve a nasty idea I have to make a choice between my mental health, and use of my hands and feet. I’d like to do some more research first though, so any links you have would be much appreciated.
Hello, I really appreciated the input of information on Otezla. I was on Enbrel and couldn’t incur the injections due to the side effects from it. So my doctor suggested Otezia instead. I was on Otezia for 5 days and begin to have severe bone pain that ran from my buttock down the back of both legs. To pain got so severe it was waking me up and wouldn’t subside without taking pain medication which would only last for 3 hours and the pain would return. I have researched thinking maybe the joint pain was due to interaction from the other medications I take but realize it was probably from the Otezla. I always have the pain in my hands daily but nothing like I have since starting this drug. Im confused some people said stay on it give it time then other reply give it a chance. All I know is the type of pain so terrible that I never had to take 3 pain meds in one day to have some relief if only temporary. If it wasn’t for concerns of the pain meds effecting my liver I would have continued to take more. I wished I knew what to do.
I have late stage Lyme w related M.S. heart failure and severe spine issues. The psorisis got better after few days of Otezla but the very severe headaches I got made the 5 day a week migraines look pale in comparison. So bad plus severe neck and upper spine pain. My tendons in arms flared I thought I pulled something I stopped after first day of 30mg I couldn’t get out if bed exhausted w bad nightmares and sleep patterns. Restarted 2 days later at only one 30mg . 2 days later one of the worst headaches w neuropathy on forehead all muscles in upper chest neck shoulders and arm spasming quit yesterday. Headaches better but pain severe in spine neck shoulders and new pain down left leg and in hip area odd. It feels like the vagus nerve is being effected which would make sense w the headaches. The muscle issues and nerve pain etc. Must stop this med also Cipro makes me have herxheimers from Lyme die off and very bad response to other drugs like Cymbalta wondering if some of you allergic to Cipro have been tested for Lyme w co infections. Have had Lyme misdiagnosed for 25yrs since age 9 now 52 got treatment for 2yrs still have it and 6 co infections we believe the fibromyalgia heart block. Was Lyme related as is the aytipical MS. Psorisis and 18 other diagnosis I suffer with. If in doubt get checked for Lyme its too coincidental that the antibiotics kicked off illnesses similar to what I know in Lyme patients
As far as the headaches, I found that Mucinex helped them immediately (seems to be a sinus headache and it has a tendency to cause sinus infections so makes sense). Pepto Bismal helped with the stomach and I did well for the first 2-3 months then steady downhill slide (exhausted, swollen, hurt all over, extreme joint pain, etc.), you have probably heard of this. Anyway, found out that it can severely deplete the Adrenal system which exhibits itself in these symptoms. I went off of it and slowly getting back to where I was. Thank God MTX helps me a lot. Enbrel did the same to me. I did very well with Remicade but had infection issues. I have very mild psoraisis but severe PA. I think it would have destroyed my adrenal system which we all need desperately. I am on adrenal supplements, etc. I know adrenal destruction. Methotrexate affects me a lot that way but can control it with adrenal supplements, limited sugar and coffee intake plus adequate rest. This affected my adrenal system about 10x as much as MTX. As some of the side effects are similar to what I had, I kept at it until I was becoming non-functional. ALSO it affected my liver enzymes.
Anyway, hang in there. Some side effects of drugs, such as headaches, can be easily handled. I suffer from sinus headaches and sinutisits plus infections so I tried Mucinex right away and then had no problem. I also had a little food, etc. in my stomach (not a lot) before taking it in the morning so ahd that under control. Also, B supplements helped initial swelling but then,… God Bless. We have to support each other. I have multiple problems too and sometimes it is one medicine affecting another. We have to inform each other as doctors don’t know the affects of all the mixes on the unique mix of our diseases.
I started Otezla in August 2016 – just stopped taking in May 2017. I stopped taking it because the side effects were greater than the positive results. Otezla helped some of my psoriasis but I still had to use steroid ointments and clobetasol topical for my scalp. I read your article back in September 2016. While I was scared I decided to continue on Otezla hoping it would clear my condition and then I could stop. I have had terrible headaches and nausea since I started Otezla. I would have headaches prior to Otezla but the new headaches were intense and would leave me in bed for 1 – 2 days with feelings similar to flu. I missed many days of work. I also experienced depression, fatigue and found myself very emotional and a lack of energy. I decided to stop taking Otezla and one week later I woke with a debilitating headache that left me in bed with feelings of the flu. I am now waiting to see if the headache, dizzy flu like symptoms go away. Please look into natural remedies. I have been watching my diet and found trigger foods that seem to activate my psoriasis. Also look into healing your gut which is related to your immune system and inflammation. I found the info from these individuals very helpful: Dan Olsen – Psoriasis – 14 Healing Secrets. Another great resource is the YouTube videos “How to Cure Psoriasis Naturally” done by Nicholas Lamborghini. I do not show signs of psoriatic arthritis at this time – just the plaques psoriasis.
Update on my condition:
I was on Otezla for nearly a year and stopped. Depression, fatigue, intense headaches that would make me miss work. I also had to use clobetasol topical for my head and psoriasis ointment on my body and still it did not clear my skin. I also had bruises all over my body. I looked like an old woman and my skin was thin. I told my dermatologist and she said it was not from the steroid ointments nor the otezla. I stopped the Otezla and my headaches went away but it took some time. However, the bruising continued. I asked my dermatologist to put me on Taltz – this actually worked! Within a couple months I was completely clear – no steroids! The bruising stopped. So I am sure it was the steroids for me – I actually think it was the topical I was using on my head. After a year on Taltz I thought I beat the psoriasis. Decided to try natural remedies. I started Dr Kellyann’s psoriasis and eczema protocol. I also started CBD. I was great for 5 months and slowly my psoriasis is coming back. I am now starting Taltz again. I believe Steroid ointments and topicals caused my bruising. I tried and still use coconut oil to sooth my psoriasis. It requires patience and repetition but it is worth a try. Check out Dr Kellyann Psoriasis and eczema protocol. It helped me. I believe a lot of my condition is caused by stress also. I hope to go back to natural remedies only when I retire
Beginning my second week of ortezla. I feel much worse than when I began, My hands, elbows and especially my neck hurt terribly. Some gastric problems and a bad headache most of the time. Prior to this I was on Enbrel for about 10 years. Had pretty good results, but developed some balance and vision problems. After two MRIs,
Ten brain lesions were discovered. Now there is disagreement between two neurologists as to whether I have developed MS. I don’t know whether I should keep on with otezla, don’t think I can. Have been on methotrexate, humera, Enbrel, gold shots, for years. I’m 69 and can’t believe I’ve lived this long with all these meds.!
My story is probably one of the worst when it comes to stomach problems. I developed, bloating ,pain in muscles, nerves, joint, my feet were on fire my toes Where swollen, they look like sausages .they where red. my toenails from being so swollen poped out of the skin. I was in excruciating pain.I decided to get off OTEZLA after 8 weeks. two days after I stopped my toes whent pretty much to normal but then my stomach started blowing up by the third day my stomach was so bloated I was rushed to the hospital I’ve been here now for 5 days they have been doing many tests I’m writing this from the hospital bed. I am having colonoscopy, my liver showed weird things. they are checking my liver. they suspected cancer or a major infection they took some of the fluid out of my stomach and they’re sending that to be checked .I know the medicine poison my insides I know otezla was the poison it is a terrible medicine .SAM
I am sure the liver problem was caused by the Otezla as I am having weird liver enzyme problems. As far as the swelling, I TOTALLY relate. I couldn’t curl my hand into a fist. Terrible. I never had my nails pop out of my skin though. Yikes!. Drink TONS of water to flush your system and detoxify what you can. Take B100 supplement. I found Otezla severely depleted my potassium and magnesium but especially potassium which might be part of the swelling. I was constantly taking potassium and B vitamins to counteract. We can’t detoxify like other people as it is too hard on us or we may need to retain some medicines in our systems but there are ways. I understand the pain. I also had terrible pain and I am still trying to recover and get it out of my system. Hang in there and fight the good fight. Otezla is a potent medication for sure
Thank you for sharing your husband’s story, it pulled me out of my nightmare! 20 years with plaque psoriasis. Went on Otezla titration dose for one week, got tingling in fingers, nurse said give it some time to go away. Tingling went away, began 3rd week of 60 mg a day Otezla, and started having pain in arms and wrists, excruciating 10/10 on the pain meter. Double Tylenol dose didn’t touch pain, purchased heating pads, tried ice packs, NO relief for 48 hours.
Couldn’t even sleep due to pain, went to ER at 12:30 am and stopped Otezla as per ER doc, given Vicodin to relieve pain and get some sleep.
2 days letter, feel about 75% better. Hoping there is another med for me, but in no hurry to be a guinea pig.
I am also allergic to Cipro, interesting…
it needs more time than a few weeks. I was the same. I felt terrible for many weeks but kept kept strong. 6 months later and I feel great. Everyone is different I get that but It’s worth the struggle.
The medical literature with the prescription also says it will take 3-4 months to begin working. Many of the stories here don’t go past the first month. Side effects usually go away so stopping because of them seems like you’re not giving the med a full chance to work. Beginning with a healthy diet (gluten free, sugarfree at least) and taking supplements to improve liver health may be a wise way to approach side effects instead of claiming it “doesn’t work”. Chances are you had gut/liver issues before taking Otezla that simply were exacerbated upon adding the med into your regime. In that case any med might have done the same. Supplements and/or meds to combat symptoms in the short term may help also.
I have been on Otezla for over a year. I am also using Embrel at the same time.
I have a mild headache all the time. I am mostly used to it by now.
I am mildly depressed and tired more than usual. I am uncertain how much it is affecting me, I feel like I should be in a better mood some days than I am.
I have some muscle pain that I did not have before, again it is minor.
I am 95% clear of psoriasis, in fact the best thing it does is get rid of the inflamed red patches. There is still some dry and flaky skin in those spots, but rub it off and put on some lotion like everyone else and you are good. No one would really know I have anything if they saw me. I only look for it because I am used to seeing it.
My arthritis is much better. I take no steroids anymore. My hands were sore all the time before, they are much less so now. Swelling in my knees went away as well. Still some pain in my feet though.
Supplements do combat some side effects but this is a dangerous drug. I was on it 6 months and wasn’t bothered much the first 3-4 months (actually felt better). NO, I did not have liver issues at all before beginning. This stuff did weird things to my enzymes. I didn’t know but my blood tests showed it. My adrenals were shutting down. BECAREFUL minimizing what others say. Some people do very well on it as you are but drugs work differently with different people so don’t tell them they aren’t doing this or that. I used supplements and know a lot about supplements but drugs of this caliber can be dangerous. It isn’t always simply fixed and can kill someone. I think if you are having severe reactions, you should get off ot a drug, not keep going and try supplements. I had no problem combatting headache, diarrhea, initial swelling, etc. with supplements but kept on going until I was getting past the point of no return. Most of the complaints here are not about the initial side effects. People aren’t complaining about those for the most part but real life threatening issues.
Where did you get your information on Otezla and NSAIDS, I cannot find anything online.
Everyone has their own experience. Thankfully this site does provide some information that the standard sites seem to have omitted. This helps you make a fully informed decision. Always search high and low for the good, the bad, and the ugly of every product you put in your body.
My personal experience with Otezla is a rocky beginning with a wonderful long run.
They say it takes three months for it to be effective. It took every day of that three months for me. But then it was like a pain switch was turned off in my body. My PsA pain was gone, the stiffness is still around a year later, but the pain is gone.
After three weeks of starting, Migraine City, population me. I was going through my Imatrex like it was candy for about a month. Then my body adapted to that side effect. Some dizziness and bowel problems during that first three months also.
By the end of the first six months my body Psoriasis was 90% clear and the Psoriatic Arthritis pain was gone with just stiffness left behind.
It has now been a year, I get one or two migraines a month, pretty normal before Otezla so I can’t say that it is that med causing it. I am about 97% clear. Psa pain free.
The only draw back that I am experiencing that can be tied to the Otezla can also be tied to other medications that I take for other things. It seems to be an in thing now to say medications can cause confusion. And all my meds say they do. And I am having what I call senior moments all the time. Even though I am just over 40.
could any one give me feed back about stelara
second injection feel about a 100 years old pain every were tummy legs and so on
Tried embrel injections they did not work for me, but do work for others. The stellera I have been getting injections for i would say about 2 years and I am 90% more clearer. I can not say that it has completely helped my pain because I also suffer from severe fibromiagia, but I can tell a difference in my joint and muscle pain some better pain level on scale 1 to 10 used to be a 10 now is a 8.
i was enbrel for 3yrs with no side effects and wonderful results then my dermatologist suggested otezla since it seemed better and no lab monitoring….i should have never switched i was on otezla for 50+ days and had to quit…i was like an old man i could barely get out of bed, no appetite lost 20lbs in couple weeks….couple trips to er for abdominal pain which they said was more likely gastritis which i never had a problem with before….overall otezla is an evil medicine…rule of thumb if a med is working for you don’t switch!
I have been on Otezla for 5 months now. First off there is no way anyone would take 100mg a day. It is 30 mg twice a day and you slowly build up over two weeks in a starter pack to twice a day which is 60 mg all together. As with every drug there are side effects. Yes there may be stomach upset and diarreah, yes there may be a headache or two. These symptoms go away. My aches and pains are minimal and my plaque psoriasis is 90% clear. I would take all those symptoms for the pain free and lesion free days. You have to make the decision for yourself. Each of us is different. For me this has been a life saver.
On Otezla since December, 30mg twice a day, it is my miracle drug. Absolutely no side effects and 90% clear, I’m thrilled the only issue I have ever had is with the insurance company.
I’m 51 y/o female dx; Psoriatic Arthritis / Ankylosing Spondylitis. Worked as a Paramedic 20 years. I thought I was just accident prone. Problems w/ Achilles, knees (surgery on both), back “injuries” (not the case) back surgeries. Still going to work but requiring duct taping knees, feet, wrists,fingers. Finally was dx in early 1990’s. Back then only meds were Methotrexate. I took that from 1994-2006 then the new Rheumatologist added Enbrel injections weekly. I never went into “remission” from day one it seemed only to clear my 15% coverage of psoriasis and only slowed the progression of disease, I plateaued in the help I was getting from both drugs. In early 2009 I was ßwitched to Humira- injections every other week. I asked my doctor the difference. He responded Humira- is a larger molicule and absorbed differently.While on it I started getting terrible psoriasis eventually covering 70% of my body it was so bad that I could measure the height of the lesions. Nothing worked to help or soothe the pain on my skin, my scalp was so thick I could tap it and it sounded like I was tapping on a football helmet. This is about the time I heard Humira is being prescribed for psoriasis. Aprox 39-40 months into Humira- I was dx stage 3b Metastatic ILC breast cancer.
I’m 20 months into cancer treatment; 6 months immediate chemo w/the standard 6 chemo drugs plus all of the non-chemo drugs (premeds)then drive back for Neulasta shot. I took it like a champ!! with the few speed bumps involving labs needing a IV dose of mag,blood,infections requiring a few days in hospital here & there. After 6 months had mastectomy & 9 lymph nodes removed. Four weeks later I started prejeta & herceptin infusions every three weeks and @ the same time I started radiation daily for 9 weeks. I burned so bad it was “bad 2nd° burns” on my cheßt right flank from bicept to well below axillary area to about my 8th rib,my back from spine over shoulder blade& upper back of arm. I stayed in a hotel 2 nights in middle of week as it is 130 miles round trip & just too exhausted going daily. I fell asleep after a shower on my side & when I got up my flesh from under my arm (axillary area) was still stuck on the sheets. After I finished radiation a week or so later I was hurting still in axillary area & upper ribs. I drove into town to ER before midnight,they did ultrasound and found a abcess grapefruit size behind my chest wall. I went to surgery without even calling my mom. I had a note I wrote for the doctor to call my mom immediately after surgery.
She went through one of the incision sites from mastectomy. I didn’t understand why no drain used this time either??? Instead it was left side open & packed w/15′ of rolled guaze. Home health came every other day to unpack,clean& repack. It was little over 5 cm long& 5cm deep. I could see into my thoracic cavity, this went on for 6 months to close from inside to outside.
Five weeks later I had to restart the progeta with the initial loading doses of both and start all over. It’s been 11 months & time for mammogram of course that means MRI of chest, that was 2 weeks ago and guess what? I have another one this one is 7cm radius. Looking back with my radiation oncologist the scan done week before I started radiation (so they know my machine settings) I asked “what’s that”? Her response ” oh my bad it’s a fluid pocket”. Yes I had it all through radiation. You hàve to understand I have a VERY high pain threshold due to 20 yrs of severe joint issues. I still worked on the ambulance with my bone pain& after 1st knee surgery then again after back surgery. I needed bilateral knee replacements few years prior to cancer dx but I’m tired of doctors.my cancer is estrogen-,progesterone-,HER2+ that’s why oncologist wants me on the progeta & herceptin for a year because it’s a wait & see, no daily meds to help keep reoccurring cancer from coming back.
OK this is the kicker – there was NO BLACK BOX WARNING ON HUMIRA WHEN I STARTED IT. JAMA had a story that the original studies of Humira increased breast cancer AT LEAST 6 FOLD!That was from 2006. The FDA ordered the pharma company to add the black box warning. The pharma company was reprimanded for not doing it. It wasn’t until the end of 2009 that it was added but the warning was mixed into the picture at the bottom of page. Finally it was added to section 5. The not so funny thing is the mean average of the combined cancer in the study was thirty something months. Mine was just a few months longer than the mean average. Also I just happen to have a mammogram a few (about 8 months) after I started Humira!!!
I have the entire information sent to me from the FDA plus any public paperwork, info on all of the patients in the double blind placebo studies in U.S. & in U.K.
The NUMEROUS WARNINGS STATED “CHILDREN & ADOLESCENT” REPEATEDLY. JUST ONE LITTLE WORD ONCE BREAST CANCER.
OK I’m finally getting a place discussing my future treatment for my auto-immune disease with a new highly recommended Rheumatologist for psoriatic arthritis/ankylosing spondylitis. He told me I needed to start something now then we will do infusions of a new drug as I’m 20 years into this terrible disease that I had gone undiagnosed for at least 10 years prior to my dx 20 years ago. I MADE IT PERFECTLY CLEAR ; NO MEDICATIONS THAT HAVE EVEN A POSSIBILITY OF CANCER AS A SIDE EFFECT!! I don’t want to play with my immune system, I just can’t take that chance. I leave the Rheumatologist with slip for all new x rays, a Rx for METHOTREXATE & PREDNISONE 40 MG DAILY ??????
I DONT KNOW WHAT TO DO NOW??
I AM TRANSFERING TO MD ANDERSON IN HOUSTON FOR HELP MAKING THIS IMPORTANT DECISION.PLUSSURGERY TO GET THIS ABCESS BEHIND MY CHEST WALL OUT!!
*Had cancer (aggressive type) could come back.
*Had extensive radiation; possible secondary cancer
*arthritis drugs (new,unknown extended study for cancer.
* my disease is so advanced I have to take something…
F.Y.I – this cancer dx was told to me on 50th birthday.
Must Read! The great man who cures all known diseases, Dr Sebi is a healer, pathologist, herbalist, biochemist and naturalist, who immigrated from Honduras and who has committed his life to the service of helping people cure their diseases. In 1988, he took on the Attorney General of New York in a Supreme Court trial where he was being sued for false advertisement and practice without a license after placing ads in a number of newspapers, including the New York Post where he had announced: “Aids has been cured by the Usha Research Institute, and we specialize in cures for Sickle Cell, Lupus, Blindness, Herpes, Cancer, Als and others. Pre-trial, the judge had asked Dr. Sebi provide one witness per disease he had claimed to cure however when 77 in person witnesses joined him in court, the judge had no choice but to proclaim the Doctor NOT GUILTY on all accounts, proving he did in fact have the cure to all the diseases mentioned in the newspapers. Several celebrities have sought out healing through the Doctor including: Michael Jackson, Magic Johnson, Eddie Murphy, John Travolta and the deceased Lisa Left Eye Lopes who proclaims in the video: “I know a man who has been curing AIDS since 1987”.. i want to inform the public how i was cured from ALS(MND) by Dr Sebi, i visited different hospital but they gave me list of drugs which is very expensive to treat the symptoms and never cured me. I was browsing through the Internet searching for remedy on ALS and i saw comment of people talking about how Dr Sebi cured them from ALS, CANCER, HERPES, DIABETES and so on… when i contacted him he gave me hope and send a Herbal medicine to me through courier service that i took and it seriously worked for me, am a free person now without problem, my ALS result came out negative. I pray for you Dr Sebi. Am fully cured. you can also get your self cured my friends if you really need my doctor help, you can reach him now: (drsebiherbalisthealinghome12@gmail. com) You are indeed a HERO!
“Dr” Sebi is not a doctor. He is a fraud, a quack and a scam artist…. and he’s dead.
the cost of this drug is outrageous…for 30 pills its $1300…im so sick of pharm. companies profiteering off a disease people have no control over whether or not they get it…this country makes me sick to my stomach…they charge so much to cover the cost of lawsuits for the people that things go wrong on…unacceptable…the way medical is ran in this country USA is CRIMINAL.
I am getting Otezla for free, the drub company is paying my copay. Ken
I know, they hv offered the same for me! I wonder why? So many trial-and-errors? Maybe Otezla really does work! I have only experienced the usual side effects such as; stomach upsets, appetite suppressed, a few headaches, abdominal pain, depression, tired, and nausea. I am a very sick person anyway and most meds I am on do the same thing. Been through a sample pack, and 3 full packages 1-30ml in morning and 1-30ml at night. I have not seen an improvement in my skin. I did athe first, but not the balls of my feet are more thick and crusted, my scalp is my flaky, and my face has patches of plaque psoriasis that I never had until i started this medicine. Everyone’s bodies are different so give it a few months then if doesn’t work try something else unless you are allergic! Then discontinue immediately of course!
I appreciate you sharing what you and your family have gone through. I have a different perspective I’d like to share. I have had Psa for more than 20 yrs and psoriasis for 35 yrs, as well as a couple other autoimmune diseases and migraines. Additionally I was diagnosed with Lyme disease in 2012, which may well have preceded all this, after 20+ years of wide ranging and debilitating symptoms resulting in the consistent and complete destruction of my health and life as I knew it. Otezla has been a godsend for me. While I did experience side effects, most of which I had prior to starting the Otezla anyway, they were manageable. Certainly no worse than what I had dealt with prior to Otezla, and they have stopped. I have been on Otezla now for over a year. Not only has it helped my PsA but also my chronic gastritis, bowel issues, chronic dry eyes and overall total body inflammation and pain. My quality of life at this point is the best it has been in at least 7-8 yrs.
I have everything you do wonder if I have Lime Disease that caused all of my auto immunes, migraines, different types arthritis, severe fibromiagia, psoriasis, and other health problems?
It’s a potent medication. It has side effects. Some people may not tolerate it well and others will. Though I don’t doubt the veracity of the reported side effects, at the same time the sort of severe adverse reactions reported aren’t found as common side effects in the literature. When you have a chronic, degenerative disease like psoriatic arthritis there are a number of choices you can make. All of these choices will impact your life. Additionally, each case of PA is different. The risks of any medication should be weighed against the benefits and the manner in which the disease will impact your life if not treated.
Hi Debra, any update on your husband. Hope he is feeling better. Has there been any disclosures/updates on Otezla?
I just a prescription approved for this drug and the first month supply is due to come tomorrow. I do not PA, I only have plaque psoriasis in most parts of my body. This information is making me very wary of this drug. I am debating just going to use a light panel instead.
your body is totally different than the person in the story above, for one she states that the full dose is 100mg and its not. it is 30mg 2 times a day. not exceeding 60mg. it will effect everyone differently, i have been on it for 5 months and had the body aches, a simple B Vitamin Complex has put that to rest. no other problems at all. please do not be afraid to try otezla. i was 90% covered for 5 years and now i only have one spot the size of a quarter left. all im saying is please do not pass on it due to one persons bad experience please.
Could I ask why you decided to take B Vitamin Complex? Did a doctor suggest it? I’ve been taking Otezla for nearly 5 months. In more pain daily with very sore legs and I have noticed that my veins are swollen. I have never suffered with varicose veins.Thinking of contacting my Rheumatologist for advice before my next appointment. Thanks
I have been on Otezla for most six months. It was prescribed for me for psoriatic arthritis but I must tell you that 95% of my psoriasis was gone within 2 months. I have healthy nails for the first time in 20 years. Perhaps give it a try & see if it works for you.
You mention that your psoriasis is gone but how is your psoriatic arthritis?
I have been on Otezla for 8 months. My PA has mostly gone away, but i do have more muscle pain than i had before. I am willing to accept that since i have been off all steroids since i started and that is great news. I also have bad psoriasis and it is 90% gone now. I have found that i feel generally healthier since starting it. The side effects i experience are mild headaches and some depression. I have found the depression is tolerable because i am able to wear shorts and t-shirts and enjoy my life more.
Hello, I am led in bed with the most terrible headache, I started Otezla a week ago today, on the 2nd dose off 20mg I had a headache for a day and half, and now I am up to 30 mg twice daily, I have this terrible headache again, I have also a very deep muscle pain in my left leg, from my ankle up to the top off my thigh, if I try bending my knee something feels like it is going to snap in the front off my thigh, so I’m led with my leg out straight, I can’t even bend my knee up, it seems to be getting worse. Do you think these symptoms will go? I was really hoping this was going to be a good thing to take.
I am also laying on my bed with a HUGE headache. I have been on Otezla for 3 weeks and this headache has been going on for 4 or 5 days..I dont want to stop taking it because it is the only biologic that I could get for free. I was on Simponi and they wanted $3000 copay..
I am going to just keep hoping the headache means the drug is starting to do its job.
Diane, I am on day 5 of the initial Otezla treatment. I have exactly the same painful symptoms (extreme headache, sinus pain, neck pain, overall body aches, and THE WORSE PAIN in my right lower leg and knee…to the point I can hardly bend my knee.)
What did you decide to do?? I’m ready to go back to my Enbrel injections and call it a day. Otezla doesn’t seem to be worth all the excruciating pain.
I have suffered with PA for 27 years. I’ve been a long term user of Embrel . It worked for about 12 years then just out of the blue stopped helping. So doc switched me to Humira which was a big mistake. I had a severe outbreak while on this drug and discontinued it after 3 months. He then switched me to Stelara and I was on it for 7 months. Though it didn’t make anything worse , it wasn’t really helping either. So I just this week began Otezla treatment. On my 4 th day and so far no symptoms. No headaches, stomach aches or diarrhea. I’m hoping this helps but I appreciate all the I’mput so I know what to watch for.
Let me start by saying that for a living I ask questions. Difficult questions in regard to persons physical health so please don’t take offense to what I have to say or ask.
You mentioned your medical Hx in your narrative and tha is appreciated. But could you go into further detail for me. What medical conditions do you have (fibromyalgia, respiratory infections, urinary tract infections). What does your diet include? Are you gluten free? How often do you visit for PCP and or the ER for acute illnesses?
If you have the information about my questions I wil proceed with my next several questions.
Hi Aaron, let me first explain that this article was written about my husband who took this medication, not myself, but I can tell you that my husband was an extremely healthy vibrant man with no history of any health problems. He spent his life working as a contractor in carpentry and was extremely fit. There is no history of any kind of chronic illnesses that even ran through his family. He seen his PCP about once a year for a health check up, usually on my insistence. He always got a clean bill of health from his doctor. He ate extremely healthy and yes he is gluten free because of my insistence and eating habits. He is a big drinker of water, mostly from working outside in the heat and sun and we regularly walked each night. So, as you can see there were no underlying conditions or poor life style habits. It wasn’t until he developed an upper respiratory infection and was given Cipro to treat it that his health took a downward spiral. Several days into the cipro he began to develop arthritis type pain, migrating tendinitis and fatigue along with GI upset. He never recovered from any of that and went on to develop psoriatic arthritis and a host of other problems. Within days of taking this new drug things went from bad to worse and he is still having major problems and pain. Anyway, I hope this answers your questions.
I’m kind of surprised that anyone would Rx Cipro as a first line treatment against a URI that hadn’t been cultured. Very unusual decision.
Could it be that a virus triggered your husband’s PsA? It did mine. A virus is often a trigger for a gene that is already there. I got the parvo virus and woke up in pain from head to toe. It’s been 4 years and any time I get a virus, bacterial infection or have surgery the normal pain I live with goes thru the roof for a couple of days.
Why do you mention gluten free ? Will gluten create inflammation and the psoriasis feeds off that?
This is what I’m thinking, I have autoimmune disease, psoriatic arthritis, + celiac.
Thanks for sharing. I have been on Otezla for 11 months now and my PsA pain has improved tremendously but I wondered since it was so new if side effects just had not been documented. I think it’s a wonder drug but can see how it might not be the same for everyone. Is there a metabolic reason that it works for some and is devestating for others? And why are NSAIDs an issue when taken with this drug?
I’m glad it is working for you, just be aware that many of the dangerous side effects can occur later on down the road during your treatment. As for why it is devastating for some and a miracle drug for others is just like any drug on the market, it has to do with the genetic make-up of each person as well as under lying conditions. Each persons body will metabolize and absorb and distribute the drug in different ways which can lead to the drug being distributed throughout the body in different ways, leaving some with no side effects and others with mild to severe side effects. If there are underlying conditions the drug may activate them setting off other problems. As for NSAIDs not being used with it, is because both this drug and NSAIDs get metabolized and detoxes in the same liver pathway, so when you take two drugs at the same time that get metabolized in the same pathway there is the potential for the liver to not be able to handle the amount coming through, which can lead to one or both drugs staying in the liver too long. If the drugs stay in the liver to long they will do damage to the liver pathway which can be permanent. This can cause a spike or a lesson ing of the effectiveness of one or both drugs which then cause serious side effects. If the damage is permanent then other drugs, supplements or foods that have to use that pathway will not be able to be detoxes normally leaving the person to have chronic reactions to anything that has to use those pathways. So, you should always consult your pharmacist ( not your doctor because they are not as versed on drugs and drug combinations as pharmacists) which drugs can be taken together and how long you should space taking them apart.
My husband also took Otezla. He was healthy until 4 days on Orezla. After 4 days he experienced the SAME symptoms that you described Debra, getting worse every day. He was very tired and sore with muscle and joint aches, then developed a fever and terrible UTI infection, so bad that he had to be hospitalized for three days with non stop drip of antibiotics. He developed grave infections and severe dehydration all after taking Otezla. Even if they claim Otezla does not suppress immune system, I am feeling right to be suspicious of this drug – esp the comment above that mentions it does “suppress an immune activator called PDE4″… so it suppresses PART of the immune system!? What is that about? Sounds like affecting the immune system. I blame Otezla for his immediate infections and pains after starting this drug. He has stopped Otezla as of his trip to the hospital! I think it does definitely affect the immune system and also he is a heart patient on NSAIDs. Why wasn’t avoiding it if you take NSAIDs mentioned more prominently as well? His Dr claimed there should be no conflict with his NSAIDS. WHAT? WRONG. This drug needs more research. To those who find relief, good…but look out for future repercussions.
Here is a link to report Otezla side effects…
(Other links here have just shown side effects already reported.) Report any side effects that you have here.
(Leg pain, tendons, unexpected infections, etc)
Hi, I have been taking Otezla for the past 3 mths.and have noticed my right wrist and my right ankle swelling and very painful to touch. Some muscle pain that I didn’t have before. I was diagnosed 11yrs.ago with RA,then it has changed to Psa.I have tried almost every single drug on the market. The only one that was working for me was Enbrel. I developed a skin condition on my left ankle last year , then the underneath my feet, started peeling, itching and heels cracking. I could barely walk. I was sent to a dermatologist who gave me all kinds of creams etc. Then Otezla came out and my rheumatologist said to try it. I do have side effects. In Canada it has not been approved for coverage by the ODSP.I would like to know if anyone is taking Enbrel and Otezla together. My doctor said I should if my joint pain is getting worse. Any suggestions?
Your article is a very helpful find. I started taking Otezla in August on my rheumatologist’s recommendation for my RA. Almost immediately I started feeling the deep tendon, ligament, and muscle pain that you describe regarding your husband.
I continued taking it, thinking that it was unrelated since there were no side effects similarly listed for the product. I am a highly active swimmer and runner that has deteriorated in the last few months to a point of pain and aches. Shoulders hurt too much to swim; ankles, knees, and feet hurt too much to run.
Two questions for you if you have the time:
1) Did your husband report the symptoms to the FDA via their online MedWatch form (or by phone)? I just did.
2) Has he had any luck with symptoms in the past year+ ?
I’ve been taking this medicine, Otezla, fo a week now. I have had some stomach issues since starting but I’ve noticed it decreasing each day. I’ve not had any mental/emotional issues nor any other side effects found common with taking this medicine. This is for plaque psoriasis that I’ve suffered with for over the past 15 years. To mention also, I have noticed it is clearing up the spots over 80% of my body and as I’m sure, there are many whom this drug has not been a good match with/for. I, however, and perhaps many as well have had minor or less reactions from this said drug. It is common with drugs, old and new, that they work for some but surely not for all. I will simply say that there are those out there where this drug is working, presently, and with all you have suffered, I pray you get better and soon are able to find the RX that will benefit your conditions.
I saw your posting on Hormones Matter blog. I am one week on Otezla and I have not noticed anything different with the psoriasis and I actually thought it was too soon anyway. But, reading her above story frightens me. I do/did have depression since I started and just the past few days I have terrible leg pains. Stomach issues are not that bad. I do think the medicine depresses your hunger – so I have to force myself to eat. You stated you only had slight stomach issues – just wondering how you are doing into week two?
Hello. I just spoke with my doctor 10 minutes ago and advised her I am stopping the Otezla medication.
I have psoriatic arthritis AND acute psoriasis on 80% of my body. When I started Otezla I was at 50%. In less than 6 months the lesions have quadrupled. They are bloody. The epidermis recycle was every 7-10 days. Now it’s 3 times per day. BP is always elevated and resting heart rate jumped from 78-82 to 110-120.
Please – if anyone takes this drug, monitor yourself and do not ignore symptoms!!
Thanks for posting this! I suffered from PA for a long time! Finally my wife talked me into going to the rheumatologist. I was prescribed otezla! I made it through the starter pack (1 month) I had all the side affects listed above! I was determined that this would be my miracle drug, so I continued on for another refill, then a third one! My joint pain has gone through the roof! For me it’s knees, ankles and feet! Also, the depression has been severe! (although I expected that, so I again tried to “tough it out”) Well, recently I’ve been in so much pain, I’ve been telling my wife that I think I’m dying! And the severe fatigue has confined me to my bed, or the couch! I stopped taking it today and actually feel a little better! I have appts. next week with my primary provider. I’ve called several times to the rheumatologist and left a message! No call back! I pray to God that this is not permanent! I am no longer living! Just surviving! I served in the military for 32 years. I was so excited to retire and enjoy fishing, hiking, etc. I am so sorry to hear your husbands story! I hope he and I both get past this! Thanks for listening!
Dave…any updates? I could cut and paste your words above and use them verbatim! i’m on month three with a call in to doctor. I cannot move…my hip on the left sdie is the worst. Hope your doing better!
John,,, Somehow I’m seeing this all these years later. I hope you have improved. I have found a new Rheumatologist that has been very good but I’m still having a tough time. I’m basically living on Prednisone since November! I have been on Tremfya since January and started Methotrexate about a month ago. Neither is working for me and the doctor discontinued Methotrexate because of side effects. He wants to try another biologic, but I’m moving to anther state at the end of the August. He feels I should let my new Rheumatologist make the call. I hope something changes. I hope you are better too!
Glad I found this! Like you, I researched Otezla and found nothing negative. My Rheumatologist prescribed for my PA and told me that it was found to be a fairly benign drug. I started about 5 weeks ago and took my last dose yesterday after deciding it must be the source of my recent trouble. You see, I have been on Lisinopril for HTN for 10 yrs and have always maintained good control. In the last 2 weeks, I have had several blood pressure spikes to dangerous levels. Three days ago, I was awaken by a horrible migraine and nausea. I saw my PCP and she sent me for a CT scan, which was normal. I seriously thought I was having a stroke! I’ve never had a migraine before and never want to again. I would rather take my chances with Humira or Enbrel than stay on Otezla and risk a stroke from outrageous blood pressure. Do not take this drug, people! It’s not worth it.
I am a migraine sufferer but the Otezla headache was one like I have never experienced- two nights running – woken out of a sound sleep in excruciating pain.
MD halved the Otezla night headaches.
I don’t see myself contenting with this poison.
Please read up on Humira. A friend of mine got cancer from taking this drug and barely made it through. Her process through this was brutal.
Her surgeon said she can never take this drug again…that it would kill her. About 1/3 of her tongue had to be removed. The surgeon also told me of many other cases that he has had treating cancers that Humira brought on. An attorney for these type of cases said that more than 50% of the people that take Humira get cancer. It suppressed the part of a person immune system that fights off cancers. I might add that this all happened to my friend only 3 months into taking Humira. Is has a black box warning. Also, not much insentive to get this drug off the market as it is a multi-billion (with a B) market. Please be safe and well!
I’ve had my first really severe flare up about a month after starting otezla. I also always feel sick; like I’m getting a cold. I’ve now been on it 3 months. Joints now hurt that never did before. BTW in the last year I finished chemotherapy, had both hips replaced, breast reconstruction and now I need a shoulder replaced. My knees never hurt before otezla but now I have trouble with stairs. I really felt the flare was due to otezla. I’m still on it. Does anyone know how to go off it? I was warned not to stop abruptly. I read the book, “the Autoimmune solution ” by Amy Myers and started the diet and recommended supplements. It think it’s helping.
I was taking Enbril for about three years with decent results. I visited a new doctor because of Obama care. The Dr. recomended Otezla as a safer alternative. After taking the first pill of the third day, my heart started racing and began to have extreme pain in my knees and ankles. My resting heart was 125 bpm and my blood pressure was off the charts. I went to the Urgent Care and the doctor looked up the side effects and said that there were no indications that it could cause my symptoms, but should stop taking it for a few days just to see. I called the dermatologist who prescribed it and he said the same thing and recommended restarting after all my symptoms stopped. 3 days later I restarted the start pack and on the second day had the same reaction with pain all over my body. Unfortunately the symptoms never went away and now months later I am in extreme pain all the time I have been going to the doctor constantly and had every blood test. They all come up normal. I am laying in bed as I’m typing this and I don’t know how I’m going to get up to go to work.
Hello Debra I took otezla for about 3 weeks and felt horrible.. I already had issues with anxiety and gastro but not as severe as after taking it. I’ve stopped now for about a month but my stomach is really bad bloated pain loss of appetite weight loss cause I can’t eat 🙁 I wonder if it could of been because of otezla since I stopped a month ago?? I’ve had the stomach issue for a week now 🙁
It is possible that your stomach issues are from the drug. My husband has suffered with SIBO and gerd since taking this drug. You may want to try taking probiotics, drinking kefir and refining your diet . Try stopping all gluten, dairy, soy, sugars and simple carbohydrates. You don’t have to do it forever, but you should do it for about six months while using probiotics and trying to heal your gut. This drug works at the cellular level and it can change the way your body metabolizes foods , which in turn changes gut flora, so you need to rebuild all of that and hope it helps. You can also try slippery elm which helps to heal the mucosal lining of the gut and soothes it at the same time. It may help calm down the bloat and pain. I hope this helps some and I hope you recover soon. Good luck to you
I am on day 45 of Otezla and have felt horrible since I began. My joints are worse than prior to beginning treatment and whenever I do even the smallest amount of activity, I am in severe debilitating pain in all my joints to the point where I can’t even tolerate bang touched by my husband. My rheumatologist just poo poos all these effects and says it will get better, just give it the full 90 days. Anyone have any advice to offer? Just typing this hurts my knuckles!
please stop taking this drug, you are doing ireversible damage to yourself. Please do not rely on your doctor to know what is best for you. Doctors only know what they are told by the drug reps that filter out brought their offices peddling their drugs and offering these doctors kick backs for passing them out and keeping people on them. It is a practice that needs to be made illegal because it has cost millions of people their lives and health. You know your body best because you have lived in it for since birth and somewhere deep inside your gut you already know this drug is not right for you and is doing damage because you are obviously out on the internet looking for stories or studies to back up what you already know in your heart and head, so listen to your gut and stop this awful med before you become disabled or worse. Go back to your doctor and tell him/her that you will no longer take this med and you need to sit and talk about other options. In today’s world you must become your own advocate and take your health into your own hands or you will injured by doctors and pharmaceutical companies that DO NOT have your health or best interest in mind. Just so you know, the damages my husband sustained from this drug have become permanent, the pain is worse now than it ever was before this drug. He wears braces everyday and most days can’t even pick up a coffee mug. All his doctor could say was sorry, it’s a new drug and we just don’t know who or how many it’s going to injure until it’s been on the general market for ten years. My husband has become nothing more than a statistical percentage that you will see listed under adverse side effects of this drug, with no recourse or antidote. If you continue you to will be part of that thirty percent of users who have experienced one or more of the adverse reactions from this drug and if you have a descent doctor you may get an ” I’m sorry”. It’s not worth it, your gut knows what you need to do, now let your head do it, before you regret not listening to yourself. Anyway, good luck to you
I have been taking Otezla for over a month now. I don’t feel well at all. I am having some real issues with my stomache. I am thinking that I should stop this drug after reading your story. Thank you!
Thank You for this post!
I have suffered with severe plaque psoriasis for over a decade. I have refused the biologic drugs for fear of cancer and weakened immune system. I thought Otezla was the miracle I have been hoping for.
Sadly, I was wrong. Upon taking this medication I developed a significant degree of obsessive thoughts and ruminations. My agitation was intense and frightening. Nothing happened that would have caused me to feel this was, and the only thing I had done differently than the days before was take this new medicine.
I felt relief to see that you said it can cause depression and other emotional side effects. I wasn’t going crazy.
Maybe it is just my brain chemistry so I can only speak for myself. I just think the full list of side effects should be given so we can be aware. Otezla might be a step in the right direction for the awful psoriasis we live with. Just please be careful.
I have been treated for severe depression for 20 years and it has been controlled so I have a fairly normal life. When I developed psoriasis and psoriatic arthritis, I took methotrexate for 7 years, but the dermatologist quit prescribing it and started me on Otezla. I was reluctant to take it, given my history of anxiety and depression, but she insisted I try it.
After 7 days, I went into a crying spell, triggered by nothing, and skipped a few doses. I began taking it again on the 9th and 10th days, 3 more pills. The 11th day, another half day crying spell.
I will discontinue this medicine, it didn’t do anything positive for me.
Sorry to hear such bad news my case liver transplant 4 stage kidney 3 or 4th stage enema 7 10 trips to ER otez la given me mild stomach ache curbs my apatite have had skin problems 35yrs it’s great for me and most patients