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Re: Lupron DepotFrom: Anne (anonymous@obgyn.net)Sat Dec 7 14:50:21 2002
At Fri, 6 Dec 2002, Brune wrote: > >At Thu, 5 Dec 2002, Christina wrote: >> >>Hello, >>My name is Christina and I have taken Lupron twice. >>They usually like to give 6 months of injections, one >>injection per month. After 4 injections during my >>first round, I desperately asked the doctor if I had >>to take anymore. The hot flashes were really >>interfering w/ my functioning. For example, a regular >>hot flash will rise in intensity, like a hill, and >>then come back down to baseline. Mine were not. They >>got to where they would rise (think of a graph) and >>then stay high or in the high range fluctuating in the >>high range. It got to where it took them forever to >>get back down to baseline. Very weird. Anyway, the >>doctor said, after 4 months, that the adhesions and >>cysts were probably died up enough by that time that I >>probably did not need to take any more Lupron. Thank >>God. Two years later, I had surgery again. This time >>the endo was embadded into my bowel (thus the horrible >>IBS), along with the ususal places of on the bladder, >>uterosacral ligaments, abdominal wall, intestines, >>ovaries, and cul-de-sac (area b/t the vagina and >>rectum). They put me on Lupron again. They told me >>they could not remove the endo on the bowel w/ the >>laser, so the longer I remained on Lupron the longer >>the endo would remain dried up. Ok, so I took it >>again, and for as long as I could. For the hot flash >>problem, I took Premarin, and that helped make the >>flashes more tolerable, although in the 4th month of >>Lupron the Premarin started losing its effect. Now, >>something extremely scarrryyyy..... After my 5th >>injection, I started having neurological side effects. >>(Do they tell you about these side effects in the >>paper insert in the Lupron boxes or the lit. the dr. >>gives you??!?? --Ha! Yeah, right!). I would have >>blackout periods where I would not know what had >>happened. For example, I would park my car in the >>parking structure, look at my watch and wonder why I >>was over 30 min early to where I had to go. The next >>thing I remember was looking at my watch again and it >>was 45 minutes later!! My keys were still in the >>ignition switch of the car, but thank God it was off! >>When I "surfaced" I was simply staring over the top >>rim of the steering wheel (so I had a "blackout" not a >>"pass-out". If anyone were to walk in front of the car >>and wonder "What the heck is wrong w/ that girl?!?" I >>would not have known it.) >> >>I also had severe bone pain. Yes, Lupron will cause >>bone loss, so increase your calcium intake. Luckily, >>my bone loss was minimal. I also took glucosamine and >>chondroitin, which helped a bit. >>I had another "blackout" in the tub, but luckily it >>was only 10 min long and I at least knew that it >>occurred after it did. (I was scared to take baths >>after that and took showeres instead). >>Also, many times of having to pull the car over >>because of severe cramps in my feet and bones, wrists >>while driving, etc (this lasted long after I was off >>the Lupron). >>I also had many instances where I would stop at a stop >>light and truly wonder why I had stopped (weird). >>After I had gone blind a few times at work (and I >>worked on a computer)--this led to a mini 'breakdown" >>of sorts at work, over which I also had no control >>(this is not me!!)--I don't even remember the break >>down--all I remember is ending up in the boss's office >>and trying to write down the word "Lupron" and >>couldn't(it looked like chicken scratch). Finally I >>got the word out of my mouth (my speech was slurred, I >>was told), and just told my boss to look it up on the >>internet. I finally stopped driving and dropped out of >>school for the semester (I could not understand what >>the instructor was saying, could not focus, and his >>voice sunded like "mush.") And what was really ironic >>was that I was a notetaker for a disabled student!) >>Anyway, to sum up---Lupron works great for the >>pain--but only for a while. I personally will NEVER >>take the drug again as long as I live. I don't care >>how much pain I'm in. I'd be afraid it would cause >>permanent brain damage from which I will not recover. >>I was lucky this time. There are other alternatives. >>For example, I'll still have pain but not as much, >>since I have started a regimen of evening primrose oil >>coupled w/ vit. E. Also dietary changes are a HUGE >>help! They are difficult to do, especially at first, >>but you CAN do it. Candida yeast-free diets, >>gluten-free, sugar-free, dairy-free, etc. (So what DO >>you eat, right?) There are cookbooks out there. One >>I have not yet cked out yet is the new one put out by >>the Endo Asso.. That is next on my list. I'm curious >>to see how that is in comparison to the Yeast >>Connection Cookbook and some others, etc.. >>As for the future.... I'll have my next surgery, but >>then I will not do Lupron or anything of the sort. I >>would rather start up with a naturopath. >>Keep hanging in there kiddooo! >>Love, Christina (email me any time-- >>merry_85282@yahoo.com) >>--- Sveta6 <anonymous@obgyn.net> wrote: >>> I am new to this site. I have had pain since age >>> 40. I'm 49 and just >>> diagnosed in the summer. I just had the Lupron >>> Depot injection. Side >>> effects for me have already started. Can anyone >>> share their experiences >>> who had this injection. I am nervous about this. >>> The pill did not work >>> so this was the only option given to me other than >>> surgery. Thanks. >>> > >-- >Hi- > I also found Lupron to be effective,but I too developed neurological side effects. My short term memory was definitely affected. I chose to stop driving because of concern with reflexive delay.I would strongly suggest that doctors warn patients more re the neurolgical side effects,in the same way that patients are warned re driving and the use of dangerous machinery,etc. > There is a serious problem with doctors and the Lupron manufacturer (TAP) not properly informing patients about the side effects of Lupron. I would suggest that you guys report your side effects to this online petition to the FDA about Lupron: http://www.planetkc.com/lupronsurvivor/ Also, to read about many other Lupron users who are experiencing serious side effects, visit the Delphi Lupron forum: http://www.planetkc.com/lupronsurvivor/
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