Cabergoline and RLS

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bigu47
Posts: 18
Joined: Sat Aug 09, 2008 6:09 pm
Location: New York

Cabergoline and RLS

Post by bigu47 »

Fellow Members,

This is just curiosity on my part, not saying will revert to this medication- BUT here it is.

In Dr. Buchfuhrer's book "Restless Leg Syndrome" (excellent read and medical advise), Chapter 6- Treating Daily RLS with Medication-Cabergoline is listed as a long acting drug that may have a unique role in RLS.

It's not used much here in the United States because it's twice weekly use and too costly for daily usage. Dr. B. indicates itis more convenient with severe RLS and less occurence of augmentation.

Well, yours truly has severe RLS and augmentation has started (even though Requip works). Has anybody in this great forum used and/or heard
of Cabergoline?

Thanks,
Lee N. :)

ViewsAskew
Moderator
Posts: 16287
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Several of our European and Australian members have used it. Nadia uses it off and on.

There is now one more problem associated with it, however: heart valve damage. Of the dopaminergics, some are ergot derived, some are not. The ones that are ergot derived, including cabergoline, are all implicated in the potential heart valve issues. On the Yahoo board, more than one member had damage; I can't recall if we have had anyone here with damage or not. Supposedly, a yearly test can see if any damage is occurring, but these days, these ergot derived drugs are not used unless there are no other options, as I understand it.
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.

ed2008
Posts: 42
Joined: Tue Jul 01, 2008 11:06 pm

Post by ed2008 »

ViewsAskew wrote:the ergot derived drugs are not used unless there are no other options, as I understand it.


ann you really need to go to pharmacy college.. we could use a few more like you in the field :-)

bingo on ergot alkaloids.. just too many other treatment options to use when there is such a huge risk

Ed

ViewsAskew
Moderator
Posts: 16287
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Too many more years of school! I'll settle for memorizing bits and pieces related to RLS :wink: .
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.

Aiken
Posts: 880
Joined: Thu Jul 14, 2005 6:53 am

Post by Aiken »

ViewsAskew wrote:Supposedly, a yearly test can see if any damage is occurring,

It's a frightening thought that, on average, such a test would tell you that you've already done six months' worth of damage to your heart.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

ViewsAskew
Moderator
Posts: 16287
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

As I was typing it, I was thinking the same thing. I don't know the details at all, but hope that the damage is slow to occur so that the test can actually tell you something BEFORE you have a completely ruined valve!
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.

bigu47
Posts: 18
Joined: Sat Aug 09, 2008 6:09 pm
Location: New York

Cabergoline and RLS

Post by bigu47 »

Well, the RLS forum has answered my question relative to Cabergoline. Thanks to all for advise!

Obviously Cabergoline should be used with care and yours truly will not use it unless my PCP and/or RLS specialist would prescribe given the studies about heart valve damage.

Last evening was pretty good for me, my wife and I went out sailing with friends of ours who have a 26 foot sailboat on Great South Bay in Bellport
Long Island. Sunset was great, sailing was perfect and RLS didn't appear until 10 PM or so! I consider that pretty good.

Lee N. :)

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

cabgoline(Dostinex) Web sites/info

Post by mackjergens »

here are a couple of links for info about cabgoline and heart value problems

http://www.medicinenet.com/script/main/ ... ekey=78828


http://www.schmidtandclark.com/Dostinex ... ecall.html

sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia

Post by sardsy75 »

Only just caught up with this thread.

Yes, I've used Cabergoline. Got up to 5mg/day on the stuff. It was brilliant ... until I started coughing ...

Gatekeeper prescribed an asthma inhaler which kinda worked ... didn't stop the coughing ...

In the end, my gatekeeper took me off Cabergoline and ordered me never to use it again as he was afraid of, not of heart problems, but of lug problems. My maternal grandmother has literally solid lungs (no, they've never figured out why) and a cough that is like no other. When my coughing got to the standard of my Grandmothers, that scared my GK into doing a barrage of chest x-rays to check for fibrosis of the lungs. Thankfully, all clear.

However, the past few months, the cough has been back. Not serious, but enough to be annoying. Will be bringing it up at my next appt with my new GK, who no doubt will be delighted to have yet another curveball thrown at him lol.

Do I wish I could go back on it? Not really ... I hate my "Grandma Cough" enough now!

Take care
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!!!

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