Lupron: A Different Kind of Suffering

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I had other plans for my future. I never imagined I would become disabled from a pharmaceutical drug that I trusted my doctor to recommend: the poison that is Lupron. I took this medication as my doctor recommended for my endometriosis, but little did I know when I took that second shot that I would be rushed to the doctor with tachycardia and that my life as I knew it would change forever. Never again would I enjoy hiking, bicycling, swimming, and travel. Even long walks would eventually become a challenge.

Before Lupron, I was a different person. I worked full-time as an executive assistant. I hiked, biked, went dancing, did all my housework, loved to cook, read and write poetry and short stories. I enjoyed life, in other words.  Before Lupron, I was organized, out-going, engaging in events and life. Watch commercials for popular fibromyalgia medicine and it describes me how I am now, just replace fibro with Lupron. I can’t engage in any of the activities I used to love. My husband took early retirement to enjoy life with me and I’ve been too sick to travel or even just take a walk in the park.

The initial shock (there is no other word for it) my body was thrown into after the first Lupron shot was horrid! I had such violent hot flashes that I would end up in the E.R. with what I was told was a “panic attack” and that I was okay, and all tests were normal! What about the fact that I felt like I was literally dying, with every side effect listed in the literature (which is staggering) for Lupron and could only manage to concentrate well enough to read about a month after I took that last shot? The first time I sat in front of a computer and read The Lupron Victims Network, I knew I had made a tragic mistake and my heart sank. Since that day, I have become an avid researcher, trying to find some way to get my life back, chasing my tail around the information highway to be disappointed time after time.

The next six months were spent trying to muster enough energy to buy groceries, have a life, enjoy my life. One of the most alarming things was the fact that I couldn’t think: I couldn’t put a sentence together in my head. My husband would ask me a question and my answer would be “I don’t know” and I really didn’t know, even simple everyday things! Such poverty of thought put me into a depression I could not explain to myself, let alone to doctors. The anxiety was horrible.

I felt a little better when my body starting making estrogen again, but then came the pain, especially in my legs. Xanax and ibuprofen were my only friends, and I took lots of them, to take the edge off the pain. I was nervous to take other medications, as I was scared of medicines in a way that was unhealthy. Every medicine I tried either made me feel worse or I had strange, sensitive reactions to it, something that still happens today.

All this happened in the fall of 1997, one day after my 41st birthday. I will be 60 this year and have been sick THAT long. There were periods of time when I managed fairly well with a handful of pills, massage and other gentle modalities. The popular water exercise everyone recommends–water aerobics–provided little to no relief. After a year and a half, I gave it up and hurt LESS.

Then, I had a surprise. I was 46 and almost fainted at home one day. I went to the doctor and found out that I was pregnant for the first time! We were shocked and elated until I went into withdrawal from muscle relaxers, tranquilizers, and other pills that I was taking to help manage pain, anxiety, and all the other symptoms. Five days later, I miscarried my baby at 3 months pregnant. We were traumatized. I blamed the doctor, Lupron and big pharma.

I found out later I had a prolapsed uterus from taking Lupron, and two years after the miscarriage, I had a hysterectomy. I kept my ovaries thinking I would be thrown back into Lupron hell if I shocked my body again. Since then, I have had more problems from my teeth, to my back, to my thyroid, to dry eyes; there is always something going on in the saga of my unwellness. And, my official diagnosis is fibromyalgia! You guessed it by now, when everything is wrong, let’s not insult her by calling her a hypochondriac. Although they might as well, since it is just as hard to be taken seriously and respected, and since I HAVE a diagnosis, why look for anything else, unless of course it will make money for everyone.

My faith in the medical establishment is extremely crippled. I am surprised if a doctor believes me when I tell him Lupron made me permanently ill. There have been a few, and I mean FEW– and I have seen numerous doctors of various specialties, sometimes traveling hundreds of miles, to no avail.

I have to accept that this is now my life. I have neuro/endocrine/immune system dysregulation brought on by a poison that I willingly agreed to, having no idea what would happen as a result. Of this I am sure. Period. Nothing you can say, show me, or otherwise do will convince me that I am wrong, misled, or uninformed. I am living the sadness, and sometimes overwhelming life of chronic illness imposed upon me by the poison that is Lupron.

 

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12 Comments

  1. In 2011 I was informed by my OB/GYN that I needed a hysterectomy, I had been having an issue with excessive bleeding. I was 40 at the time. I had always suffered from bad cramping during my periods and was told by my doctor in my early 20’s “this was normal”. I lived with it for years, stuffing my face with ibuprofen every month. After I got married we had trouble getting pregnant. Not one time was endometriosis ever mentioned. We spent thousands upon thousands of dollars on infertility treatments that never worked. We adopted a nine month old boy and his twenty nine month old sister several years later. Now back to 2011, I allowed them to do the hysterectomy, they found stage four endo with tons of adhesions. They could only remove my uterus, my cervix is adhered to my bowels with scar tissue. After the surgery I was told I needed Lupron for the endometriosis, of course I agreed. After the second shot, I experienced all sorts of symptoms and was referred to a Rheumatologist. By the time I got an appointment I had already had a third shot because there “is no way Lupron can be the cause of this”. The Rheumatologist had me stop the Lupron, and ran all sorts of blood tests. I tested positive for parvovirus, so he thought this could be the cause of the overall body pain. He decided it was ok to resume the Lupron. My OB/GYN said since it had been a six month break since the last shot I had to start all over again and do a series of six injections again. So for the next six months I took the Lupron injection. I suffered horrid hot flashes, memory issues, generalized body pain, panic attacks, I had no energy and felt like I was dying. I was sent to a pain management Doctor, he finally agreed that Lupron had to be the culprit. I have had to give up my career, file for disability, and my diagnosis from Rheumatology through all of this is Fibromyalgia! At least one of my doctors is on my side, he keeps me comfortable pain wise. I was recently diagnosed with Sjögren’s syndrome also. Only because of the persistence of my pain management Doctor did I get the labs I needed drawn. I am growing very skeptical of the medical community, medication costs are rising and insurance coverage stinks. I feel for you, because I am living the same story you are. Feel free to contact me, I have been suffering for 7 years now so I can relate some.

    1. I’ve had positive antibodies for parvovirus, also. It was overlooked, discounted. Interesting! I also have some symptoms of Sjogren’s and have had numerous screenings but was negative. We all have commonalities! I will be contacting you soon via email. Thank you.

  2. Thank you Rosalyn for commented on this. Rosalyn is my sister-in-law whom I love dearly and has seen me go through Lupron hell right from the beginning! My family thought I was either crazy or dying (as I surely felt) or that dirty word hypochondriac!! It is hard when no one understands what is happening to you, but Rosalyn was compassionate as was her late mother and father as I was forever needing someone to sit with me through panic attacks and various symptoms I didn’t understand. And if you can’t comprehend why everyone is stopping at a red light, you should not be driving! So rides were needed…..oh it goes on and on for years on end changing constantly…try to explain brainfog when you HAVE brainfog!

  3. I too feel like I am reading my own story. I had Lupron in 2001, got sick in 2004 and no one linked it to Lupron, February 29, I had Lupron depot for severe endometroisis. I’m a living hell. The pain, weakness, confusion, stomach issues, headaches, and five or ten new symptoms started, but NO ONE will help me. My PCP isn’t sure what can be done “I’m a complicated case” and the OB/gyn told me to seek a hysterectomy, and the pain clinic “no longer will prescribe opioids for fibro.” I don’t want drugs, I want answers. If I go to the ER I’ll be treated like a lepor. I feel awful and these are new symptoms, what the heck?

    1. Hi Jen, I’m sorry you have suffered so badly with endo and now with the side effects from Lupron. For the endo, please be aware that hysterectomy does not really solve the problem, and endometriosis can persist after a hysterectomy. IN order to get pain relief, all of the endometriosis needs to be removed/excised. There are a fairly small number of gyn surgeons around who can do this surgery effectively. Your uterus may not even need to be removed if it is healthy. One of the best places to get information on effective treatment of endo, and on which doctors to see, is here on Facebook: https://www.facebook.com/groups/418136991574617/.

      Regarding treating the post-Lupron symptoms, you might have better luck with a naturopath or a functional medicine doctor–you need someone who understands mitochondrial damage, and how to heal the body after toxic exposures.

      Best wishes,

      Philippa

      1. Hi Jen, I agree with Philippa. My husband and I recently found a functional medicine doctor in a city not too far from us and I don’t know why we haven’t made an appointment yet, I am concerned our insurance will not want to pay because it is not traditional medicine…the medicines they do give us can help the symptoms but they are just bandaids and after years, what have they done to us?? I am trying to cut down and possibly eliminate some of the meds as I’ve realized all I do lately is sleep and I don’t really feel better…..I am a walking bandaid! LOL I know what you are going through, most doctors just don’t have the patience to address our problems and our sensitivities, ER is a nightmare, so where do we go? Even if you get a diagnosis like I did, medical schools aren’t teaching much about it. Doctors have told me this!
        So, it remains a catch 22 type of situation. I have run across some compassionate, curious family doctors who actually studied it on their own time and learned from their patients. That’s who you want to look for, I wish I knew what to tell you, but in my 18 years of illness I’ve only found a few and had to move away due to my husbands work. Now I live where everybody thinks I want narcotics and some have even refused to see me or treat me! Good luck to you and I hope you get some relief soon. God Bless.

  4. Oh my goodness, I feel like I was reading my story except I do not have an exact diagnosis! I have had thyroid surgery, been though miscarriages, and everything else you named; thankfully, I have a daughter. The downside is now she has to be checked because she is unable to regulate her body temperature and will be seeing a doctor next week. I did not know about all this when I was taking it!

    1. Thanks for the comment. I think a lot of people can relate to my story. Shame on Big Pharma! The only reason I got a diagnosis was because I was in so much muscle pain I was sent to a rheumatologist. I went in with my symptom list, which took up a whole page of notebook paper and he started nodding his head and I thought he as about to dismiss me when he asked if I had heard of fibromyalgia, did the pressure point check, assured me it was not from Lupron because he just didn’t know. It’s history from there. How long have you been sick? When Lupron and medicines like it get into your mitochondria and do their dirty business, it’s life changing in a bad way. I personally think there should be specialists who deal with (medication permanent damage) only, but the implications of that would not pass some kind of political/ethical guidelines, and I’m getting into an area I am ignorant about, but you get it. What say you Hormones Matter? I am sorry your daughter is having trouble. I hope that is resolved to satisfaction. God Bless you. I will try to email you later to further talk. I wanted this put on public forum.

      1. We agree with you, there should be physicians who deal with medication adverse reactions or more appropriately medication reactions. Many of these meds are doing exactly what one would expect. The problem is no one bothers to think these things through that far.

      2. Connie, this is a well-written article and describes so accurately the symptoms I have seen you experience over the years. After reading the responses to your article, it is amazing to see how many other women have experienced the trauma to their bodies and their lives because of this drug.

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