ENDO Messages for September, 2004: Re: Luperon: Dangerous Side Effects???

Re: Luperon: Dangerous Side Effects???

From: NIKKIE (anonymous@obgyn.net)
Thu Sep 30 07:15:32 2004

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Margret who was the specialist in florida? i live in central florida and i would be really intrested. what was your opinion on the doctor and would you recomend him? At Thu, 30 Sep 2004, margaret wrote: >
>Hi Emily, I just wanted to say that Lupron is a personal decision and if
>you are taking it and feeling relief and have a supportive doctor then
>that is great. You did ask what other women have gone through so I am
>going to tell you my experience(no exaggerations & I never had any of
>these symptoms before Lupron).
>
>I went to a specialist in Fla that hyped up Lupron and told me that it
>was a medical menopause and I would have some hot flashes and night
>sweats, but nothing that isn't tolerable. He emphasized on the
>positives, that it would stop my menstrual if not with the first shot
>then definitely with the second. He went on that I would have so much
>relief and afterwards I would beable to get pregnant and have relief for
>at least 2-3yrs. Of course, that sounded great to me and I said lets do
>it(i wasn't into endo groups or even know they were around at that
>time). I was living in Ga, so I drove 5 hrs to get to this doctor in
>Fl.Let me add that I was 20yrs old and a newly wed.
>
>So, I started the Lupron and the first shot I felt some side effects,
>but thought I could deal with them and I also got my period which didn't
>seem like a problem because he warned me of that. So towards the end of
>my first shot and the start of my second I started feeling really bad. I
>was on the floor in constant pain, I was having horrible hotflashes,
>migraines, bloating, and night sweats.
>
>Then I took the second shot, it just got worse. I still hadn't stopped
>my period, I was in constant pain and agony, hot flashes were so bad at
>night that I would wake up in the morning covered in wet rags that my
>husband would lie on me to cool me off(i was so hot he couldn't even
>touch me). I called my doctor and the nurse wouldn't let me speak to
>him, so she told me she was going to call in a prescription to lesson
>the side effects.
>
>Now on to my third and thank God the last shot(i was supposed to do
>6mths). I took the medicine as I was told and nothing happened it was
>just getting worse. I still had a period on the third one(which he said
>that would never happen), plus I was in horrible pain, I had the worst
>nausea(to the point of passing out), continued having hot flashes,
>migraines, night sweats(changed my nightie 2-3x a night), and I gained
>35 pds in 3mths. I continued to try and reach my doctor and the nurse
>wouldn't let me speak to him without an appt(they new I was in GA), by
>that time I felt it was worth the drive to go and see him. My mom and I
>went to see him and I confronted him. He lied to me, saying that it was
>normal to have your period through Lupron and he warned me about all the
>side effects I was dealing with and this is my favorite, he told me that
>I was getting fat because I was a newly wed and that I just need to
>except that (i was a lifeguard and swimming everyday, the cool water
>felt so good, plus I didn't look like a normal big girl I looked like
>the pillsbury dough boy if you poked me I would have probably popped). I
>began to cry and tell him I just want some help. He then threw a box of
>tissues at me(literally) and then I started crying harder(it seemed like
>something out of a soap opera) that is when he got up and began to yell
>at my mother and I and told us to get out that I was no longer his
>patient(i already decided that for myself) and jumped up and almost hit
>my mom trying to get out. (that is why i say make sure you have a
>supportive doctor and he has you doing Lupron because he believes it
>will really help you and not because you are his lab rat).
>
>Now, I deal with constant hotflashes and night sweats. I have to turn
>my thermostat to 50 at night, which freezes my husband and our dogs, but
>it can't be any other way. I still deal with migraines and since then I
>have been dealing with memory loss more and more as time goes on. I
>can't excercise anymore other than in the water because it hurts my
>joints so much. I have severe problems with my back and have to get
>therapy for that and still have no children (5yrs of marriage and
>trying). Please, understand that before this I was a cheerleader,
>tennis player, swimmer, softball player, just an all around girl that
>loved to have fun. Now, I am happy to get up and play with my dogs.
>
>Please, research it and go with your gut. I think its great that you
>are inquiring and getting other womens stories. For me, it was hands
>down the worst thing that I have ever done to/for myself and personally
>wouldn't ever recommend it to any of my family, friends, or worst
>enemies. I do wish you luck and their are a few women who would
>recommend it. Just remember, we are all made differently and react
>differently, so good luck and God bless.
>
>Margaret
>p.s. I lost 15pds in a mth after stopping Lupron because it was water
>weight, swelling, and bloating. The other 20pds were gone within two
>mths with a little extra work. (Fat because I was a newly wed; what a
>shmuck!)
>
>At Wed, 29 Sep 2004, Emily wrote:
>>
>>I was given my first shot of Lupron Sept. 17th. I asked the Dr. about
>>the side effects and he gave me the normal hot flashes, night sweats,
>>etc. I had heard of many people with endo that have taken Lupron, so I
>>told my Dr. that I would give it a try. When I got home from the
>>appointment I did some research on Lupron and found many websites where
>>women are warning others of the long term side effects of Lupron. Their
>>"side effects" included seizures, cardiac problems, fibromyalgia, severe
>>bone loss, bad bruising, migraines, insomnia, joint pain, short term
>>memory loss, m.s., arthritis, stroke, vision damage, jaw pain, epilepsy,
>>and more.
>>This scared me and I am wanting to know if these side effects are really
>>from Lupron. I know that these women think so , but maybe the would
>>have had these problems anyway? I don't know. No studies have been done
>>on the long term side effects of Lupron. There is a petition for the
>>FDA to do a study on long term side effects.
>>I am scared to get another shot and thinking of not getting the second
>>shot, but I am feeling some pain relief from the Lupron. I am also
>>having hot flashes, night sweats, migraines (every day), nausea, sore
>>muscles, sore joints, and bone pain. I have heard that the side effects
>>will increase with the second shot.
>>what have you experienced and what are your thoughts about long term
>>effects???
>>
>>Thanks for any feedback and/or advice and personal experiences. :)
>>
>>--
>>Emily
>>

--
NIKKIE

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