Hello and thanks to contributors for the all the past useful information and support. Very much appreciated.
My GP has now asked me to give Pramipexole a try as both Gabapentin and Pregabalin seem to have caused an unacceptable reduction in platelets. The negative correlation is fairly conclusive. It's disappointing as Pregabalin works quite well.
I did take Ropinirole in the past but after a period of a couple of months it caused symptoms during the day, so I stopped, accompanied by the usual unpleasantries, and then started Gabapentin then after that Pregabalin.
Obviously I'm not thrilled to be now offered the opportunity to take Pramipexole however I am aware that the Mayo advice is, if there are problems with Gabapentin/Pregabalin, to try DAs as a second line ie before opioids.
I read here the overwhelming posts against DAs and am aware of the Mayo caution re augmentation. A 30 to 60% chance of this occurring sometime in the future. But then that's a 70 to 40% chance if it not happening ie about evens? Doesn't that make it worth a try? I don't know how different it is to Ropinirole, which didn't work well, so guess that narrows the odds.
The serum ferritin was checked recently (390).
Many thanks for your views.
All the best,
Johan.
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Johan10
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I sure would advise you to not go on pramipexole especially since you suffered from augmentation on ropinirole (symptoms appearing in the day). This means you are extremely likely to suffer augmentation again. Instead try a low dose opioid like buprenorphine.
I think Sue meant to write: NOT to go on pramipexole.
I also advise against pramipexole or any other DA (incl rotigotine/Neupro). Your earlier experience with ropinerole indeed showed one of the telltale signs of augmentation. Following the Mayo Clinic algorithm, this means that you have both tried and failed alpha-2-delta ligands (gabapentin & pregabalin) and DA and thus your RLS can be classified as refractory. Hence your next medicine option is opioids.
So if you augment on Ropinirole then it seems you will also augment on Pramipexole. I did know they are both DAs but not how closely related they are in this respect.
Good morning Johan10. I really feel for you, it’s so difficult to decide when all you want to do is scream (just take it away) like Sue I would advise against another DA. I was on patches and then Ropinirole 6mg for years and augmented so had to come off it, it took me 13 months and that was recently and not a happy time, but feel so much better having dumped all DAs. But like you, not sure which way to turn as Progabalin has caused me to suffer swollen lower limbs and reduced my kidney function, I’ve never previously had any issues with my kidneys so it’s hard to know which way to turn. GPS in UK won’t generally prescribe Opiates like buprenorphine as they have a misguided idea that it will turn you into a Coke or Heroin addict. Could you find a sleep clinic as they usually have a far better understanding of RLS than our GPs who have no training in the condition and have little knowledge or understanding of what it does to us sufferers. I send you my very best wishes and hope whatever course you take works for you 🤗
And I don't see anything in the Mayo Algorithm that says if there are problems with Gabapentin/Pregabalin, to try DAs as a second line before opioids. And you have already tried DAs
DA's are noted in the Mayo Algorithm as a "second line" to alpha-2 -delta ligands in "Article Headlines", but I guess it doesn't necessarily follow that you have to try them as a second.
I'm hoping my GP will allow me to try opioids without going through Pramipexole. Talking to him next week.
But you have refractory RLS which is the 3rd thing in that section. And I don't even agree and I doubt if hardly any on this forum would agree to them as a second line. Good luck with your GP.
I 100% agree with Sue and Lotte. You will quickly experience drug-induced worsening on Pramipexole. Dr Earley, the top RLS world expert is clear. These drugs cause increased, severe RLS for Everyone. It's simply a question of when, not if.
Thanks Jools. Could I ask where I could find this quote from Dr Earley as I may need to substantiate my case. My GP is so emphatic about following NHS protocols.
Your doctor cannot force you to take another DA. As your GP has prescribed pregabalin, what dose was prescribed and did your GP realise it is taken at night only for RLS? It starts to work 3 to 4 weeks after you reach average dose of 150mg. Did you take it for at least a month? If it didn't work, you have refractory RLS and need a long half life opioid, like Buprenorphine or methadone.
I know the MS team at Bart's use methadone.
Well, the NICE guidance puts pregabalin and gabapentin on EQUAL footing with Dopamine agonists.It also makes clear that once Augmentation has happened you should be referred to a specialist.
As Pipps says, Targinact is licensed for RLS.
I suggest you mention to your GP that there have now been hundreds of negligence cases against UK GPs and neurologists for failure to warn EXPLICITLY about Impulse Control Disorder on dopamine agonists. Only the threat of legal action and court casa/money damages may force GPs to learn more about this terrible disease. You should mention that, as UK doctors just don't know anything. NHS and NICE guidelines are around 5 years out of date.
Link to NICE below.
If you need links to studies on Buprenorphine for RLS, show your GP this link, and ask them to look at Andy Berkowski's website. US specialists see THOUSANDS of RLS patients every year and they see the scale of augmentation.
US experts do NOT prescribe dopamine agonists. Dr Jose Thomas at Gwent Sleep Clinic is knowledgeable and he also refuses to prescribe dopamine agonists.
You can ask to switch to gabapentin. Only one case of low platelets.
You can make a straight switch. Multiply pregabalin dose by 6, so 900mg gabapentin. But take 600mg 2 hours before bed and 300 mg 2 hours before the final dose as anything above 600mg is poorly absorbed.
UK GPs are not taught about RLS and rely on out-of-date information from NHS/NICE which does not take account of the current advice from RLS experts who are mostly in the US.
You might have difficulty getting your GP to prescribe opioids, but I suggest you read and refer to this:
Two of the links from within that post are to the Mayo Algorithm, effectively the RLS 'bible', co-authored by experts in the field including Dr Earley referenced by Jools.
PS: Targinact that Pip mentions is oxycodone plus naloxone - naloxone is there to counteract constipation caused by the opioid
I take pregabalin, but after lots of faffing around with dose ...150 mg with 2 magnesium glycinate together I'm asleep within 20 minutes, 8 hours, no symptoms.
Hi, I have low platelets due to another condition but recently they are at their lowest. I take 75 mg pregabalin at night but my gp has never suggested the meds may be responsible for this decrease. Is this a common side affect?
Was your dr sure the meds are causing this? Surprised my gp never mentioned it! 😳
Hi. My platelets dropped by 20% over a 6 month period whilst on gabapentin. GP recommended stopping and in 6 weeks the levels had increased 15%. Pregabalin was suggested to try and in 5 weeks I'm back down 5%.Those are the facts. My conclusion is the correlation is pretty clear but it does seem strange as I understand it's very rare.
Maybe discuss with you're doctor re further blood test to check if it's affecting.
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Ferritin 17 is this low
Feeling low
LDN (low dose naltrexone)
Ropinirole and Pregablin
My blood test results are in, it's not low ferritin or B12
