For over a year and a half a local neurologist (listed on the rls.org list) prescribed parlodel for my acute rls. While it did allow me to sleep at nights I began to suffer many health problems. I first noticed that my hair began to fall out, I began to sweat uncontrollable. Then I went in for a routine physical and my gp told me from my low wbc and other strange blood test results, that he believed I had cancer and sent me to a specialist. Along with the commonly noted side effects for parlodel (dizziness, sudden sleep attacks) I became weak, losing ability to physically work and spent much of my time in bed. I reported this to the neurologist and she didn't believe me. Telling me that I needed to be 'tougher'. Finally my rls began to get worst, I guess that's called augmenting, and parlodel at the previous dose stopped working. When the neuologist's response was to increase the dose I told her I was under the impression that she didn't know what she was doing. Stopped taking parlodel and definitely stopped seeing her.
After I stopped taking the parlodel my hair, almost immediately, stopped falling out, however I did not experience immediate changes in my other symptoms. I was tested for everything (bone biopsy for the low wbc), tested for something like 3 dozen infectous diseases, but nothing showed up.
Then, after I had stopped taking the parlodel for several weeks my various tests began to slowly return to normal. I was began to regain my endurance and strength. This was a slow return to health after stopping to take parlodel and there is no absolute proof that it was the cause of my illnesses however I would take my experience as a precautionary note for anyone that is considering taking parlodel or for that matter any of the da's.
parlodel (bromocriptine) cautionary tale!
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ViewsAskew
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I have not heard of anyone prescribing this for RLS. It is not a mainstream RLS drug. (Although few are approved, there are still certain ones you expect to be used off-label - this is not one of those!).
I am so sorry you had to go through that, Moss. You story reminded me of the specialist I had and how he screwed up my life so badly. I hope you mend completely. Oh, the one who screwed up my life is also on the RLSF's doctor list. The best I can say is to write a letter to the RLSF and explain what happened. Sometimes they will remove a doctor from the list.
What happened to you (and me) is the only reason I stay on this board every day, 365 days a year, and read every PubMed article I can find. I don't want anyone to have to go through what we did. It's really awful. Education is so important - of us, the RLS sufferers. Since the docs don't get it, we must so that we can prevent them from causing us harm. Like you, I trusted my doc to do the right thing. He didn't. Yours didn't. Now? I don't trust anyone. I go in armed with all the facts and know as much, if not more, than they do.
Thanks for letting us know about this; glad to see (in another post) that methadone is working well for you. It also does for me. Thank goodness for small favors. . .
I am so sorry you had to go through that, Moss. You story reminded me of the specialist I had and how he screwed up my life so badly. I hope you mend completely. Oh, the one who screwed up my life is also on the RLSF's doctor list. The best I can say is to write a letter to the RLSF and explain what happened. Sometimes they will remove a doctor from the list.
What happened to you (and me) is the only reason I stay on this board every day, 365 days a year, and read every PubMed article I can find. I don't want anyone to have to go through what we did. It's really awful. Education is so important - of us, the RLS sufferers. Since the docs don't get it, we must so that we can prevent them from causing us harm. Like you, I trusted my doc to do the right thing. He didn't. Yours didn't. Now? I don't trust anyone. I go in armed with all the facts and know as much, if not more, than they do.
Thanks for letting us know about this; glad to see (in another post) that methadone is working well for you. It also does for me. Thank goodness for small favors. . .
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Hi Moss
I'm so so sorry to hear of your awful time on Parlodel ...
I was on this drug for about a month back in late 2004. Like you said ... its horrid stuff.
Blood pressure dropping like a bomb; my hair loss accelerated at a pace I couldn't keep up with (it was already falling out from the cabergoline); feeling like a zombie.
I can't remember the dosage I was on ... i'll have to go back through my thread and find it (will let you know when I do).
I fired that Neuro not long after that simply because he didnt listen to me ... but thankfully my GP did and took me off it.
(((((hugs))))) and best wishes that you find some relief that is suitable for you in the near future. Don't give up!
Take care of you
I'm so so sorry to hear of your awful time on Parlodel ...
I was on this drug for about a month back in late 2004. Like you said ... its horrid stuff.
Blood pressure dropping like a bomb; my hair loss accelerated at a pace I couldn't keep up with (it was already falling out from the cabergoline); feeling like a zombie.
I can't remember the dosage I was on ... i'll have to go back through my thread and find it (will let you know when I do).
I fired that Neuro not long after that simply because he didnt listen to me ... but thankfully my GP did and took me off it.
(((((hugs))))) and best wishes that you find some relief that is suitable for you in the near future. Don't give up!
Take care of you
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
Hi Moss and welcome to the board.
My sympathies go out with the others here, just not right for anyone to suffer for lack of an education about RLS. Silly is the nicest thing I can type here publically.
I did want to tell you that the only way the Foundation knows about the doctors that are listed here is by our experiences. If you have not done this, please think about writing to them about this doctor so that they know and have record of it.
I'm not saying that I can speak for the foundation, I DO NOT, nor claim to. However, I think for us out here in the RLS world, it's better for us to let them know if they have someone listed that might not be an educated sorce of medical help.
I'm so glad you had nothing else wrong and hope too, that things are leveling out for you. I know how hard it can be to get there, lol, don't we all.
Glad to have you here with us, Thanks for sharing.
Lynne
My sympathies go out with the others here, just not right for anyone to suffer for lack of an education about RLS. Silly is the nicest thing I can type here publically.
I did want to tell you that the only way the Foundation knows about the doctors that are listed here is by our experiences. If you have not done this, please think about writing to them about this doctor so that they know and have record of it.
I'm not saying that I can speak for the foundation, I DO NOT, nor claim to. However, I think for us out here in the RLS world, it's better for us to let them know if they have someone listed that might not be an educated sorce of medical help.
I'm so glad you had nothing else wrong and hope too, that things are leveling out for you. I know how hard it can be to get there, lol, don't we all.
Glad to have you here with us, Thanks for sharing.
Lynne