ENDO Messages for August, 2004: Re: Lupron (this may be lengthy but worth it)

Re: Lupron (this may be lengthy but worth it)

From: indra (anonymous@obgyn.net)
Tue Aug 31 00:00:22 2004

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I thoroughly agree with you that each individual is different. Some drugs may work for some, while for others it becomes their worst nightmare. I recently have been on Lupron (3 months) and once before one year ago (3 months). In total I have been on Lupron for 6 months in my lifetime. While the drug is approved be taken more than six months throughout a lifetime (I called the FDA), it is not recommended to be on it longer than a six month period without some form of add-therapy (small dosages of estrogen/prog. to counterbalance the bone loss). I, myself, have experienced negative side effects and I am not talking about the hot flashes. I personally decided to no longer use Lupron as a treatment. I have also read of some women who feel saved and am happy for them. I must make this clear, it is not a cure. It merely surpresses the pain of the endo. Once you are off the drug, which is inevitable in any treatment with the drug (you cannot be on it forever as per docs and the FDA). The pain will return. So those who do have relief it will only last while you are on the drug, and this should not be a prolonged period of time. The side effects I am experiencing have only been reported thus far by 20-30% of those recorded having taken it. Not many women know they should call the FDA and report their side effects GOOD OR BAD. This will help research. Their number is 800 FDA-1088. My side effects include migraines, blurred vision, slurred speach, and extreme joint pain. I have been taking calcium supplements. Though I share this with you with the utmost certainty know that Lupron is not good for me, I don't claim to believe this is the case for everyone. But each and everyone of us has got to be educated about our decisions. I wasted two years being uneducated, Endo is a hormonal and immunological disease. We have too much estrogen creating and feeding it and our immune system is not working properly to get rid of it (Read Endometriosis:The Complete Reference for Taking Care of Your Health by Mary Lou Ballweg, published by the Endometriosis Association). Hence, not knowing a definitive cure, docs and scientists are coming up with different ways to affect our hormones in order to maintain it and alleviate sufferers of their biggest complaint - pain. Jennifer, the original post, was correct. Lupron shuts down your pituitary gland. This not only prevents our cycle from occuring thus a cessation in feeding the endo - it also shuts down much more that the pituitary is in charge of. This is not a matter of opinion, but a fact. Call the FDA, call TAP the company that produces it. For some women, this is traumatic to their system immediately in treatment. For others, the absence of pain is heavenly and they don't mind the other effects or are not experiencing them. However, all must keep in mind that studies haven't even begun to check the long term effects of such imposititions upon your body, in this case the complete inhibition of a major control zone (pituitary gland). I am a woman, and believe in the right for a woman to choose what she will or will not do with her body. For those that receive relief from treatments whatever they may be Cheers to you. But, make sure you know what the long term effects would be as a result of your choices. For me, my joints or bones never completely recovered from the first round of treatment of Lupron, my migraines are horrendous and my vision is blurred - this makes it not a good treatment - for me. I am 33, 33! And feel like I am 80 when I get up after sitting down for 10 minutes. Those that are annoyed with reading all the negativity. Sorry, but it is my truth. I am just sharing this to help someone else research extensively before deciding on treatments. While you should not believe everything you read, you should know the facts. FACT: LUPRON SHUTS DOWN PITUITARY GLAND. How you digest this truth and guage its importance is up to you. A cure for this disease is a struggle for us all, including docs and scientists. We are all unique hormonally, we are all different. Hence, various treatments have been utilized in an attempt to rid the pain BUT NONE GET RID OF ENDO yet. So read on read as much as possible and don't get angry with someone that has had a different experience than you. If their experience was positive then cheer them on. If negative, have some empathy. So instead of being angry that someone has had a negative experience while you have had a positive experience, understand their suffering. And ofcourse vice-versa. We are all suffering, in that we are equal.

At Mon, 30 Aug 2004, anonymous wrote: >
>At Mon, 30 Aug 2004, anonymous wrote:
>>Ok I guess I'm really going to vent so here it goes. First of all don't beleive everything you read! Second of all, I feel the main reason we hear about all the negative side effects from lupron within this site is that we are all here looking for support. Very rarely do I come in here and see anything positive. It makes me sick when I read about someone scared to try lupron becuase of what they have read in here. I haven't had any side effects other than what my specialist told me I would have and I don't foresee me having any down the road.
>The recommended dosage is not suppose to exceed 6 shots, so the story in
>the "newspaper" stated that the woman had been on lupron for 18 months,
>maybe that could have something to do with it? Also, are all the lupron
>users taking the amount of calcium/vit D supplements that you are
>supposed to take while on lupron? Do you smoke on lupron?
>I understand and beleive that lupron has nasty side effects but I feel
>that people aren't giving something a chance becuase they are scared to
>death from everything they have heard, my husband often tells me not to
>read to much and now I know why!!
>Sorry for all of you who were given the option to take lupron and didn't
>because you were scared from what you have heard on here. Everyone
>reacts differently to everything and I don't know of one product out
>there that doesn't have potential side effects. I am fianlly pain free
>because of lupron and thank god for it!! That is something I haven't
>been able to say for the better part of my life.
>Grrrrrrrrrrrrrrrrrrrr!!!!
>>more info about all of it:
>>http://www.endocenter.org/lupron.htm
>>
>>--
>>anonymous!Grrrrrrrrrrr
>>
>>>At Mon, 30 Aug 2004, Jennette wrote:
>>>>Could you please share with me and others where you got your information, I would like to read about it.
>>>Thanks,
>>>Amanda P
>>>>I am reading a lot of people talking about Lupron shots and how this
>>>>stuff works.
>>>>
>>>>What I read is that this "drug" shuts down the pituitary gland and thus
>>>>stops hormones from being released. Not just estrogen, but all that the
>>>>pituitary gland controls. This drug does not affect the ovaries
>>>>directly so they aren't "trying" to compensate because they are getting
>>>>their orders from the pituitary gland which is in the brain.
>>>>
>>>>This "drug", Lupron.... is very powerful, it's nothing to take lightly
>>>>and probably is affecting people throughout their lives. Certainly
>>>>those people who are experiencing negative effects can attest to the
>>>>fact that they suffer for years after stopping the drug.
>>>>
>>>>I would almost bet, in years to come, this drug will be on the list of
>>>>drugs that induce harmful effects for the users. Remember, it was
>>>>produced to fight severe cancer of the prostate, and now it's being
>>>>passed out like candy to everyone with endometriosis since being
>>>>"approved" for this use. This doesn't make the drug safe. In time, I
>>>>believe we will once again see lawsuits by people who suffer damage due
>>>>to the use of this drug, just like so many others that aren't properly
>>>>and thoroughly tested before handed out to people who really don't have
>>>>enough information to make a decision whether or not to take it.
>>>>
>>>>The fact that doctors are pushing this drug makes me wonder about it. It
>>>>doesn't seem to be the "wonder drug" that the doctors make a fuss about.
>>>>
>>>>Jennette
>>

Next message: indra: "Re: Dr. Suggests Hysterectomy!?!"
Previous message: jules: "Re: Vommiting with Endo"
In reply to: anonymous: "Re: Lupron"
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