Thinking about Lupron - Any Input Please

Discussion in 'Fibromyalgia Main Forum' started by pamj, Mar 31, 2006.

  1. pamj

    pamj New Member

    I know this has been discussed before, but I have a different type of question about it. Typically, when you do searches on Lupron, you'll find that there is a suit against them, and that people claim that it caused Fibromylagia. It's time for me to take it again, so I'm giving it a lot of thought.

    I took Lupron for my severe endometriosis about 15 years ago, and again about 10 years ago. It was a lifesaver for me, as I had already had 3 surgeries, and I was in danger of losing function of my colon. The endo was completely wrapped around it and would have been too difficult to do surgery again without damaging the colon & bladder. We did the Lupron instead of a 4th surgery & then I started continuous birth control pills to block my periods since then. It worked great for 10 years, but I just started spotting & getting bad pain again, so my doc is suggesting one more round of Lupron & then pills again 10 more years (will be age 50 then, hopefully menopausal!). My bone density is great, so we don't have a concern with that.

    After my treatment 10 years ago, I was extremely healthy, active, and full of energy during the first few years of getting no periods. My CFS came about 5 years ago after a bad "flu", but it was also during a time that I was stressed at work & burning the candle at both ends. It seems pretty common for any autoimmune illness to strike at a time of stress or illness/injury.

    Since many people believe that endo is an autoimmune problem, as well as CFS... Wasn't I already more likely than most people to get CFS or FM anyway? I've found that many people suffered with endo years before having CFS or FM symptoms, it seems to be common with us here. How can I believe that the Lupron caused it for me? and how dangerous should I think it would be to take another course of it?

    I still think that it is a miracle drug for severe endometriosis, as I was completely paralyzed with pain during my worst times & this made me feel as physically fit as a 10-year old after treatment.

    I hate to feel like I'm being crazy to take it again. Does anyone have an input on this?

    thanks so much,
    Pam

    [This Message was Edited on 04/02/2006]
  2. Cromwell

    Cromwell New Member

    You know it occurs to me that you may get an answer from an endemetriosis site. I wish I could help you. I think a lot of meds contribute to FM by the way.


    Love Anne C
  3. leubie

    leubie New Member

    Hey Pam, I suffered from endo for so many years-----I took depro-v for years and lupron also. These drugs were injected every two weeks-----------this was the worse i have ever felt.--------I never thought the drugs caused fibro-------i thought the endo did.-------those 2 drugs i gained alot of weight-----bloat-swollen--panic attaks------I could go on and on, very mental things.----But thats ME------if it worked for you several times before????? It should be ok-------but you might want to dicuss w/ your fibro doctor!!!!!!Good Luck and sorry you are suffering!!!!!-------LOVE TO ALL---LAURA
  4. neen85

    neen85 New Member

    I think some of the natural stuff I ran across said it helped endo,but I can't remember which ones. Try searching the products brevail or neprinol.....I think I typed in "natural treatment for fibroids". You could change that to endo. I can't remember if it was one of the two above products above,or another product I found on that particular search that said it helped endo.

    I know you can use a heating pad and cold pressed/cold processed castor oil to shrink fibroids,but I haven't reasearched enough to begin treatment yet. IT may do the same for endo?? Might be worth looking into. Daneen
  5. tandy

    tandy New Member


    Just my thoughts:
    Personally,..I'd probably try another round (what is it 6 months)? of Lupron again. If you did'nt have any bad side effects with it,..and it helped you alot,....I seriously would.
    I have Endo pretty bad too.
    I tried/used the Lupron awhile ago following a lap. surgery. I had good luck with it too.
    I did'nt gain weight,..It helped my pain alot,
    The only thing I got was the hotflashes. (mild ones)
    I was due for another lap recently but I put it off/cancelled untill its unbearable.
    I figure I'll go in before summer and hopefully get some relief for awhile.
    Its been 3 yrs since a surgery for Endo.
    I'm currently on the Depo shots,...they help.
    Although I am having some spotting here and there and some pain again. Usually left sided pain,and alot of butt/tailbone area pain. My legs ache bad too.
    Good luck whatever you decide~ Its tough dealing with 2 or more rough/painful diseases!
    Hugs
    Tandy
  6. pamj

    pamj New Member

    Thanks so much for your input everyone! I'm going to trust my gut on this, since it worked before & there really isn't a better option than the Lupron as far as I'm concerned.

    I guess I was just getting concerned with the Lupron complaints on other message boards & the sites that were bashing it. I know what to expect from the side effects, and I'm willing to deal with it to get the relief it will provide.

    Tandy, it sounds like you have the same symptoms that I have. The low back pain and pain radiating down the legs is just too much to handle some days. I hope you're able to find some relief to enjoy the summer!

    take care everyone,
    Pam
  7. KateMac329

    KateMac329 New Member

    I am a HUGE advocate for this drug!!!! This drug not only saved some of my sanity but it allowed me to get pregnant when the prognosis was that I couldn't have children.

    I had all the symptoms of fibro before I went on Lupron so I am not one to say that it "caused" my FM and CFS nor made it worse in the long run.

    To me and this is just my opinion, I hope that the people who are suing the Lupron makers lose! This **IS** a miracle drug for those of us who suffer SEVERELY!

    I know what I said was really harsh but my endo got so much better after I did a few rounds of the Lupron.

    Now for about two weeks following the shot I would have severe FM and CFS symptoms. Basically I went into a major flare but then like I said two weeks later it was better.

    The hot flashes are hell though. That was my biggest complaint about taking the shots.

    I truly hope you do give it another chance to help you. Like you, it helped me and I WOULD do it again and actually may need too soon.

    Good Luck!

    kate
  8. xstew4nal

    xstew4nal New Member

    Hi Pam,
    First of all, I am glad that Lupron worked for you. I have two situations, one that involved Lupron, as my husband had cancer four years ago and when we found out, we researched and went to two different doctors here in Houston before we picked the one that had an excellent reputation. The doctor wanted my husband to take the shot for over two years, even when he was through with radiation treatment. He quit after the six months of radiation as he had symptoms of CFIDS. He went on vitamins and natural herbs with our doctor and felt wonderful until three months ago. He was extremely upset when his airline filed for Chapter 11 and we lost 85% of our pension immediately. He now is back to square one, his blood work is great, no sign of the cancer, but we both believe that between the shots and radiation it threw him into CFIDS. He now sleeps hours on end, no energy and his legs are killing him. We are going to have that checked out. We truly believe that the treatments during his cancer damaged his immune system. Our son, who is now 23, was misdiagnosed by three doctors, finally found a great one that found the cause of his fatigue, an ulcer at ten! When that healed, he couldn't go to school and finally was diagnosed with CFIDS. We found a doctor who specializes in that field and he had been doing great. Now he is back in a slump, always tired. He decided at 19 that enough was enough he was going to do the things he wanted. He sky dives works out, and is on the honor roll at college. So, long way around his immune system was damaged and he will live with this for life, having good days and bad. Both my husband and my son will not take anything but natural vitamins and herbs, but my son realizes that he will have to go back and see the doctor that had worked wonders for him years ago.
    I wish my husband hadn't taken Lupron, as he found out later that he would have been fine without it. I now pray and take care of both of them, my husband has me the most worried. I don't know if this has helped at all, but just research more and see if there is a different path you can take. We always advise our dearest friends to get a second opinion, I don't know if you have done that or not, and it is not for me to say you should. You have to do what you feel will help you the most.
    I will keep you in my prayers, let me know how you are doing and email me anytime or leave me a message. oldnal2@aol.com
    Here's to good health!
    Suzanne (Sam)
  9. 69mach1

    69mach1 New Member

    delete your email before mods see it and possibly ban you..just for warning you..hate to see you go

    jodie
  10. pamj

    pamj New Member

    ***Kate***,

    Thanks for your reply. I know it may sound harsh to feel that way, but that's why I was so torn about this decision. It was really bothering me to see all the complaints about a drug that is the best choice for those of us with severe endometriosis.

    I am so glad that Lupron worked for you, and because of it, you were able to keep your fertility. I guess people don't realize that without that type of treatment, we would get damage to very important organs (ie, bladder, colon, etc.), not to mention the paralyzing pain caused by the scar tissue & adhesions throughout the entire abdomen.

    You are right about the first two weeks, they say that the hormones will increase the first two weeks before they change to a menopausal state. I know the side effects can be tough, but it would be unrealistic to expect to stop our periods without side effects. The hot flashes are definitely the worst, I remember running to the ladies room at work & taking off my shirt till it was over so I wouldn't soak through it, and I'd go through a couple of t-shirts a night waking up soaking wet. I'm sure you can relate to that.

    Thanks for your support with this, I'm definitely feeling better about starting another round. I know that you would feel the same if you need to do it again too. It was certainly worth it for you too. I checked your profile & your son is beautiful. Congratulations!!!!!

    ***Suzanne***,

    First, welcome to the boards, I noticed that this is your first post. I'm so sorry that you've been dealing with such a terrible situation with your husband & son. You are definitely in my prayers and I'm glad you found this board for additional support.

    I definitely appreciate your advice to get second opinions, I know how important that is and I have done that. I dealt with a round of Lupron when in SF, and I had the top specialists at USCF help me with the decision. At the time, surgery would have been very risky & I would have most likely lost part of my colon & ended up with a colostomy. I was almost completely unable to go to the bathroom without using an enema & I was using constant pain meds. I really feel that the Lupron gave me a better quality of life.

    Now I'm in the Boston area, with more excellent docs, including a great holistic doctor. We've discussed natural remedies many times, and she continues to confirm that my endo is too severe to rely on natural remedies. Even natural docs believe that modern medicine has it's place.

    Thanks so much for your concern. It's always nice to know we have a place where we can look out for each other.

    take care,
    Pam