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Re: Luperon: Dangerous Side Effects???-to Margaret
From: Amy (anonymous@obgyn.net)
Thu Sep 30 11:03:15 2004
Just wanted to say sorry you have had such a hard time, and also: Did
you report this Doctor? I was appalled when I read your message about
how he reacted. He was unprofessional, not helpful, and deserves to be
reported! Just my two cents though. Endo is hard enough to live with
and battle without some doctor throwing kleenexes at you. Even if you
had not decided on your own to dump him, his dumping you was a blessing
in disguise!! Hang in there-I will keep you in my thoughts.
Amy
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
>>
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