ENDO Messages for December, 2002: Re: Lupron Depot

Re: Lupron Depot

From: Anne (anonymous@obgyn.net)
Sat Dec 7 14:53:02 2002

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Previous message: Anne: "Re: Lupron Depot"
In reply to: Christina: "Re: Lupron Depot"

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.
>>

This blackout experience is a really scary serious side effect that potential consumers of Lupron need to know about! I strongly suggest that you report this to the FDA at: https://www.accessdata.fda.gov/scripts/medwatch/

Next message: Marie: "Had lap on Thurs, only 20% removed, ?? on whats next?"
Previous message: Anne: "Re: Lupron Depot"
In reply to: Christina: "Re: Lupron Depot"

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