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Re: Lupron - Is it worth it
From: Veronica (anonymous@obgyn.net)
Tue Apr 26 16:47:15 2005
I appologise to those i offended - but those of us who have had the
horrible experience feel judged as well - every day - no one believes
you - doctors, friends and even other endo patients - that was the point
of my message - because obviously i'm having a hard time and having a
nervous breakdown - so sorry -i'm DEFINATELY not on a high horse and
glad to hear people are doing well.
At Tue, 26 Apr 2005, OUCH wrote:
>
>I would also like to mention that there are many treatments that don't
>always have the most pleasant of side effects, but are invaluable to
>those that would die without it, ie. Chemotherapy.
>
>At Tue, 26 Apr 2005, OUCH wrote:
>>
>>Wow, how terribly judgmental of you to scorn this woman for stating her
>>positive experience with Lupron. How very presumptuous of you. I
>>applaud someone for telling us what worked for them.
>>
>>THAT IS WHAT THIS FORUM IS HERE FOR.
>>
>>I am an adult and can do the research for myself, so I am not going to
>>run out and get the "Lupron experience" just because someone on this
>>forum said it was good for THEM. I have been on Lupron and it was no
>>good for me, but hell, if it worked for someone else, whoopee, that is
>>what it is designed to do.
>>
>>Get of your high horse. This is an open forum for people to share THEIR
>>experience, strengths and hope.Geez.
>>
>>At Tue, 26 Apr 2005, Veronica wrote:
>>>
>>>How long have you been off it?
>>>Because it worked for me too - yes those side effects went away after a
>>>while - then years later after being off for years - they returned -
>>>full force with a vengence. Just like Endo does. Everyone has
>>>different degrees of Endo as well. Some seem to be "cured" by pregnancy
>>>too. So Lucky for You - but first - you shouldn't think you're sooo
>>>lucky - because anything could happen at any time. I've had years of
>>>good times - no pain plenty of times - it doesn't mean a thing. It
>>>comes back. At least for SOME of us. Some us never get pregnant - to
>>>experience the SO CALLED cure - becuase we CAN'T.
>>>We're not so LUCKY. I wouldn't rave about a stupid drug that gave you
>>>those horrible side effects ONLY for a few months. A few months could
>>>me IRREVERSIBLE damage to someone else for the rest of their life! I
>>>would never send out a message like that. YOur lucky. I hope it stays
>>>that way for you. We're all different - that's certainly apparent. YOu
>>>all have a LOT to learn about Endo hell.
>>>Good luck with that.
>>>
>>>At Tue, 26 Apr 2005, Jen wrote:
>>>>
>>>>Janice,
>>>>
>>>>I'm one of the (few??) lucky ones. Lupron was like a miracle drug for
>>>>me!
>>>>
>>>>I was also 33 when I first started the injections. (I'm at the end of
>>>>my 7th - and last - month now.)
>>>>
>>>>I was scared to death to be on Lupron. I heard the horror stories - the
>>>>side effects, etc. But after a LONG debate I opted to try it to stop
>>>>the pain. So I began with a 1 month shot to see how it would go. I
>>>>then went to 3 month injections.
>>>>
>>>>My doc says my reactions to the Lupron have been very different than
>>>>other patients, though.
>>>>Side effects were:
>>>>Hot flashes (but I used to be cold constantly - so this didn't really
>>>>bother me all that much.)
>>>>Nightsweats (but only the first 2-3 months or so)
>>>>Joint / bone pain (mostly at night - my hips and legs were the worst -
>>>>again only the first 2-3 months or so)
>>>>Strange food cravings - but nothing tasted good. Then loss of appetite
>>>>(again, for the first 2-3 months) But it went back to normal.
>>>>Insomnia (but I've always suffered from that - it just seemed a bit
>>>>worse)
>>>>Really dry skin
>>>>Headaches (this was probably the worst, and longest lasting side effect)
>>>>
>>>>Benefits:
>>>>No periods / No cramps!
>>>>Weight loss
>>>>My hair grew super fast - LOL
>>>>Bladder / bowel problems disappeared (I no longer have to pee every half
>>>>hour!!!! Woo Hoo!!!!!)
>>>>HIGH energy - I felt like I was on speed (I was always exhausted before
>>>>Lupron)
>>>>My insomnia changed. Although I have a harder time falling asleep -
>>>>when I finally do I sleep like the dead for 4-5 hours. (I used to wake
>>>>up constantly)
>>>>Although sex is still painful - it is SO MUCH better than it was.
>>>>
>>>>I think overall my mood improved. I still get emotional - but not more
>>>>than I did with PMS. My husband and friends say that they've seen a
>>>>definite positive change in my personality, attitude, etc.
>>>>
>>>>I never did the add back therapy. And the only reason I'm not staying
>>>>on the Lupron longer is $$ (my insurance doesn't cover it) - and wanting
>>>>to see how my body reacts to not being on the Lupron any longer. My doc
>>>>and I are going to see how things go from here. I would have been due
>>>>for another shot a couple of days ago. I am hoping that there is some
>>>>residual benefits - but we'll see. But if things start to go back to
>>>>how they were - I would do the Lupron again.
>>>>
>>>>Like I said in the beginning - I'm one of the lucky ones. I am just SO
>>>>thankful that I didn't let the fear stop me from trying it. I know that
>>>>isn't everyone's experience.
>>>>
>>>>Good luck to you!!
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