Pergolide

[Snowdrop1947]

I was taking pergolide for Restless Legs for about 15 years plus and it was effective. It was a joy after the misery of years of RLS. However, six years ago the GP and neurologist both decide to stop prescribing the drug as recent research revealed in certain cases it might affect the heart valves. I was referred to to a cardiologist who expressed surprise that the drug was being prescribed for such a ‘benign ‘ condition. Yes, benign!

Pergolide is usually prescribed for people with Parkinson disease but was also found to be effective for RLS, but that was 20 years ago.

I’m now 72 and I’m prepared to take the possible risks, such is the misery of severe RLS I experience every night,

My question: has anyone in the community ever taken this drug?

[Hidden]

i actually thought it had been banned longer than 6 yrs ago, and as you say because of heart issues. Someone on here might have taken it before the ban, but not seen anyone say they had.

[LotteM]

There is information on Pergolide on the website of Dr Buchfuhrer, one of the most renown RLS-specialists and - researchers. See: rlshelp.org

Get yourself informed (rls.org and rls-uk.org are good starting places, and the RLS website of Johns Hopkins). And if you need medication again, talk to your doctor and get a more up-to-date medicine than Pergolide. Maybe consider gabapentin pr pregabalin first and not one of the (other) dopamine agonists.

[Snowdrop1947 in reply to LotteM]

Thank you for you reply. I have been taking gabapentin and Targinact ever since Pergolide was deemed unsafe and therefore no longer prescribed.

I’m afraid they have not helped me and I intend requesting pergolide, even if it does shorten my life . It’s a risk I’m prepared to take.

I will certainly read what Dr Buchfuhrer has to say. Thank you.

[LotteM in reply to Snowdrop1947]

That is interesting - but not at all good for you! - that the Targinact and gabapentin have been ineffective. May I ask you what doses you take, at what time of the day and for how long you have taken them? I assume you take/took both? And do you take any other medicines?

You may also consider writing to Dr Buchfuhrer ([e-mail]), describe your situation and history and ask for his advice. He may know of better alternatives.

I assume you’re in the USA? Whereabouts? The US rls.org has a list if knowledgeable RlS specialists; there may be one relatively nearby.

[Snowdrop1947 in reply to LotteM]

I live in the U.K..

I take 600 gabapentin in the morning: 300 gabapentin and 5 mg Targinact mid afternoon and 600 gabapentin, 5 mg Targinact and 0.50 Ropinerole in the evening.

I am now no longer able to sit in a cinema or a concert or a car for any length of time.. This all changed with the discontinuation of pergolide.

[Joolsg]

How long have you been taking Ropinirole? You shouldn’t need all 3 drugs. I suspect if you change the timing of the Gabapentin- take it all an hour before bed- you may get better coverage. Gabapentin has a sedative effect as well as helping rls. The Targinact dose is very low- 20mg a day is the average dose.

I’m concerned that your rls is playing up in the day. That’s usually a sign of Augmentation. If you were on pergolide for 15 years- did your doctors stop it cold turkey or prescribe a newer dopamine agonist 6 years ago?

[Hidden]

Just to support what Jools says, Pergolide is a Dopamine Agonist (DA), so theoretically any other DA should be just as effective e.g. Ropinirole.

If you're experiencing such severe symptoms despite taking Ropinirole, Gabapentin and Targinact it does suggest augmentation, especially as you're experiencing symptoms during the day.

This is a typical sign of augmentation.

It does seem intuitive that if anybody's experiencing daytime symptoms that medication doses be split and spread to give cover throughout the day.

However, if daytime symptoms are due to augmentation, then this splitting does not deal with it.

Also, although splitting the dose of Gabapentin does act to maintain a more consistent level of it in the blood, it is actually a lower level than it would be if you didn't split it. Therefore less effective.

Counterintuitively, I can witness from my own experience, reducing and stopping a DA e.g. Ropinirole reduces daytime symptoms and combining split doses of Gabapentin into one dose at night, makes it more effective.

[Snowdrop1947 in reply to Hidden]

I have always been fortunate that I have had GPs who were never anyway dismissive of the seriousness of RLS.

My Restless Legs were controlled for the fifteen years when I was prescribed pergolide by my then GP who had read not only was it effective for Parkinson’s disease but RLS too.

I was ‘weaned” off it and started Gabapentin. When the RLS became an intolerable problem I was referred to a neurologist at King’s College hospital who recommended Targinact.

I posted in the hope someone might have been prescribed Pergolide but seemingly not.

Today I have an appointment with the practice Pharmacist to discuss the options.

It should be noted at no point did I experience augmentation with Pergolide as I did with Ropinerole.

[Hidden in reply to Snowdrop1947]

Hi, I appreciate that if, in the past you took a particular medication without any apparent problem, i.e. that was detected, that you would want to return to it.

However, firstly it seems unlikely that Pergolide was any more effective in treating RLS than other Dopamine Agonists.

It also appeared that once you have augmented on one DA e.g. Ropunirole, then switching to another DA e.g. Pergolide, means you are likely to augment on that too. All DAs can cause augmentation.

I believe that Pergolide for RLS was discontinued because it has significantly more serious side effects than other DAs particularly heart problems.

Since Targinact is prescribed for "refractory" RLS i.e. RLS that doesn't respond to first line treatments. It seems logical that it's the dose of that, that needs to be adjusted rather than switching from one Augmentation causing DA to another that has heart risks.

If anyone agrees to prescribing you Pergolide, it would only be responsible of them to first order some heart tests as recommended by the National Institute of Health and Care Excellence.

I hope the pharmacist is informative.

[Snowdrop1947]

Thank you - very informative as I had no idea that Pergolide was a DA.

I have forgotten what it is like to have a reasonable let alone a good night’s sleep.

I’m up every morning at about 4 and walking around like a zombie .

The life of a Restless leg sufferer!

[Hidden in reply to Snowdrop1947]

I agree, I've been to that hell too, up at 3 - 4 am every night after 2 - 3 hours sleep. I did however use that time constructively. It wasn't so much the RLS motor symptoms that woke me it was just "early waking" insomnia due to Pramipexole, probably the worst of the DAs ( apart from Pergolide).

Furthermore, if tried to take a nap during the day, within seconds I'd start twitching which jolted me awake.

I've been lucky, I've now stopped the Pramipexole, sleep well most nights and no twitching. Just taking Gabapentin once at night.

[ELLSBELLS]

Pergolide was the first drug I was prescribed for RLS. Unfortunately it had no effect on my RLS and so I suffered a few more years before trying all the usual suspects. Frustrating , as for years I knew dhydrocodeine was effective but GP would neither prescribe not refer me to neurologist.

[Sara_2611]

I've never used it my spologies