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Need advise With Lupron
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08-11-2000, 10:10 AM
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Need advise With Lupron
I ahve posted a couple of times but for those that dont remember me I am 33 and have endo. I started Lupron on the 2oth of July and am scheduled to have the next shot on the 17th of this month. My doc had said he was using this to make sure a husterectomy is what I need. Well, since the shot I have had a few problems. One being leg ( bone pain) It was bad for a bit and was in tears to the docs office. I went in and saw the nurse practitioner ( my doc was on vacation)who preceeded to tell me its arthritis. I also mentioned to her that my heart feels like its going to beat out my chest. She took a listen and said oh my brb and by the way who is your primary care doc.She came back a short time later and said my heart was beating very rapidly and she suspected it was do to my thyroid. Told me to go get blood work done and get into my primary ASAP. Went to primary the next day and was told he didnt believe it's arthritis and my blood work for the thyroid came back normal. He suspects it's from the lupron (at least I gather from his round about way cause he isnt sure) but had me do a halter monitor for 24 this Mon. Results will take a bit to come back. He told me we would have to weigh the good with the bad to see if I should continue with Lupron and he would discuiss this with my specialist hopefully before my next shot. My question to you all is would you do another shot? My Father has heart trouble ( just had valve replaced). In my eyes I dont really want to go through another shot I would rather live with my endo pain. Since he was using this as a test should I go ahead with the hysterectomy? Any opinions would be appreciated and sorry for the length. Just confused as to my next move on fighting this dreaded disease. Ps forgot to mention I had my period 3 days after shot and 2 weeks after that I was bleeding again even heavier then I ever have for 4 days.
Thanks so much,
Mary
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08-12-2000, 01:37 PM
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Need advise With Lupron
Mary,
I've been thinking about your post since yesterday, and my best advice is to talk with your doctor. You mention that this is a "trial" to see if you should have a hyst or not - what results would determine hyst vs. no hyst?
The basic premise of Lupron is it puts you into medical menopause. The drop in estrogen levels is the concern re: heart/bone problems - this is one of the main reasons why hrt is typically suggested during menopause.
I wouldn't fool around with heart problems - please get medical advise before proceeding with more Lupron. (BTW, I am a "Lupron survivor" - had none of these symptoms. But I was on the watch for them.) This is a POWERFUL drug.
Please let us know how you do.
Dixie
SLH 7/11/00
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08-12-2000, 04:42 PM
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Need advise With Lupron
Thanks for your response.If I have no pain while on lupron then a hysterectomy would help. If I still suffer pain then a hysterectomy might not be the answer. The thing is my primary may say that my heart could handle this but in my mind it says no way. Do I listen to the doc or do I listen to myself? I am just so confused. I want it to all stop and be ovewrwith. Once again thanks
Mary
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08-12-2000, 07:14 PM
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Need advise With Lupron
And...are you having pain (I suppose you mean cramps with period type pain)? While on Lupron, I had a very heavy period with no cramps - that was SO ODD.
Ever feel like a guina pig? Ah well. I still would not mess with possible heart disease. Sounds like possibly an HMO is rearing its ugly head in okaying your hyst? JMHO.
Dix
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08-13-2000, 08:23 AM
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Need advise With Lupron
Unfortunatly yes I have a HMO but I dont know what there response would be. I have fought them before and won. It's not to hard to beat them when you threaten thewm with local media attention. I had lower back problems for several years and went to several docs all saying it was because of my breast size so they recomended a breast reduction and deamed it medicaly necessary.( I now wonder if it is due to endo, back is better but still not right).HMO refused but I fought for 2 weeks and called the media and they in returned called the insurance company and the very next day I got a call saying I was approved.I have pains usually on my right side and it is present all month long and have heavy and very crampy periods. The cramps seem to be better whith the Lupron but my right side pain is still there. When the did the lap in March I had ashesions ( which he believes was caused by eno as I have not had any surgery other then the breast reduction.So, the pain I am still having he suspects is the adhesions reforming. Both ovarys where attached to the abdominal wall and my bowel was also attaches to it. Im just confused and want it to end. I did order the shot thru the pharmacy but told them there is a good chance that I wont be picking it up. They understood. I really dont think its a good idea to take it but I dont want a hysterectomy if it will not solve my problem. I had one fibroid that was located on my uterus wall and was the size of a golf ball ( not to bad). I am hoping to hear the results of my heart monitor tomorrow If I am lucky. My heart doesnt seem to be racing to much anymore and the leg pain has gotton better. Dont know if thats because I am due for another shot or not. Will let you know what happens . Thanks again for your response
Mary
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08-13-2000, 12:42 PM
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Need advise With Lupron
Mary,
I had 2 Lupron shots. After the first one, my only bad reaction was leg cramps, which subsided by the time for the second shot. When I went in for the second shot, the nurse checked and double-checked for any negative symptoms prior to giving me the shot. I had a cold, and she even double-checked with the doc to see if this would be a problem.
You might want to do some further snooping on this site regarding endo. (go to the top of the page and click on search, then follow the instructions and type in endometriosis (check the spelling) It is a tricky disease. If the Lupron IS helping with your period pain, your doc/hmo might decide that one shot is enough. Keep asking questions!
Dix
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08-21-2000, 07:54 AM
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My Friend was given the same choice and she regrets the one she made
My friend just had a hysterectomy and I believe she is on week 8 of recovery. She too was a endo. sufferer for years and has had many problems. Her doctor suggested lupron, she trusted his judgement, she also quit taking it midway. She had lots of problems with it, and then later was told she was the youngest he had ever prescribed it for. Before you go any further with the treatments research Lupron PLEASE. Cindi (my friend) does not have access to the internet or a computer so therefore, I have done all her research. She asked me to do this years later after the Lupron, only because she was having problems. All of which could have been related to the Lupron, it also can cause several problems in the future after you quit. Her doctor also tried to explain away her complaints and her concerns. DONT just trust him...if you put in a search for Lupron on the net you'll see what I am saying is true.The thing that helped her the most was taking the pill 365 days a year.IT stopped her period which is what causes the endo. She has had lots of problems and surgeries since the lupron, all are mentioned could have been due to being left predesposed because of lupron, in the research, however,
none can be proven to be caused bye it. The catch 22.The burden of proof.After her hyster, no endo. was found, but her cervix was gone,and so are a lot of other concerns. But the reprocussions of having taken the lupron shots, could last her life time. Research...please...
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