Went cold turkey!

[lee_uk]

I’ve been on pramipexole for about 2 years, lowest does one tablet. I felt augmentation had set it in as my symptoms had spread to my arms and much earlier. I warned myself over a week to half a tablet then went cold turkey 2 weeks ago. Still having some very rough nights with little to no sleep. What should I do? Continue as I am, speak to my GP and try some sleeping tablets and or try pregabalin ?

[Joolsg]

Well done for getting off pramipexole. As you were on it for a short period of time and at a low dose ( actually, what was the dose you were taking?) then, hopefully, the symptoms should start to ease off 10-14 days after the last dose. Most people find they need to take some meds to control their RLS, but before you consider asking for pregabalin, find out your serum ferritin levels. Raising above 100, preferably above 300, relieves RLS in 50% of sufferers. You may be one of them.

However, raising ferritin takes time- months usually- so if the RLS is unbearable, pregabalin is the new first line drug treatment choice. It takes 3 weeks to become fully effective and you should increase the dose slowly up to a max of 300mg, taken at night around 2 hours before bedtime.

[lee_uk in reply to Joolsg]

I was on 0.088mg. Many thanks for the advice, How would you go about being tested for the serum ferritin levels? Should I ask my GP or can it be done privately?

[Hidden in reply to lee_uk]

Your GP should normally do a ferritin test if they are doing non-urgent tests at the moment.

There are other non-oharmacological measures you coukd consider.

Here's a link that might be helpful

uptodate.com/contents/treat...

[ScribblerCLT]

You should always take medical advice on discontinuing strong neurological meds; withdrawal is nasty. I’ve been taking 0.125mg of pramipexole for six months, but augmented when I tried to increase the dose and my doctor advises me to take my pramipexole as a split dose to minimize the onset of augmentation. I won’t take anti-convulsants again because 200mg gabapentin for two weeks had horrendous effects on me and it took me four weeks to shake off all the symptoms it triggered, so no way will I chance pregabalin. When I eventually augment on my current dose of pramipexole, I’ll quit all dopamine agonists for good. I have started educating myself on diet and exercise so that I’m prepared.

[Hidden in reply to ScribblerCLT]

Sorry to hear the gabapentin didn't work for you.

I'd say normally you are correct to say people should take medical advice about stopping medicines.

Unfortunately, it seems in the case if RLS, sometimes this is not a good idea. I have read on this site quite a few peiple that have been told by a doctor to stop dopamine agonists cold turkey or wean off one in only a few days.

Doctors are generaly great, but you can't expect them to be omniscient. I have had two serious misdiagnoses myself and had to refuse allowing a dr to carry out a dangerous procedure on me which they weren't competent to do.

Especially in the case of RLS it really pays off to be knowledgeable about any condition you have.

[ScribblerCLT in reply to Hidden]

Good point, Manerva. What I should say is: take into account medical advice, but be your own best advocate. The doctor that warned me about dopamine agonists also prescribed in its place the gabapentin, which all agree now that I should avoid. And somehow between my neurologist and (now ex-)GP, nobody told me for six months that my initial diagnosis was lifted from Multiple System Atrophy to Parkinson’s, triggering a clinical depression that would have been fixed faster with information than with antidepressants. Now I gather as much information as I can and prepare to do battle if I must.

[Madlegs1]

Well done so far. The worst is over.

You say 'some nights' are bad. Do you get a warning? It could just be triggers- keeping a food diary is helpful.

It would be useful to explain the situation to your Dr and ask for some short acting sleeping pills -- just to get over the hump, so to speak. I use zolpidem or stilnoct. No bad effects and good to go next day. But only for the odd night. Not long term.

As others have said, you need to address the underlying cause of the rls- iron, triggers, medications etc.

I also take Magnesium citrate-- about 200 mg ,which helps me get to sleep. But any of the -' ate' mgs are good.

All the best on your road to full recovery.

[lee_uk]

Well good news, have been to the GP and had my blood tests done already. Will wait on the results.

Good idea on the food diary. Most nights are bad, maybe 1 in 7 not so.

[amdrew_m]

Hi Lee, what were the issues with Gabapentin? I've just started taking the same dose but it doesn't appear to be making a difference to my RLS symptoms. Many thanks

[lee_uk in reply to amdrew_m]

Hi, I’ve never taken Gabapentin I think it was someone else just mentioning it in their comments. I’ve only tried pramipexole.

[amdrew_m]

Thanks Lee, yes I see it was ScribblerCLT

[Hidden]

I'd try kratom first

[lee_uk]

Still having unbearable nights and every night now(lucky if I get an hour).My legs were never this bad before, has the pramipexole left me permanently like this? It’s been over 3 weeks now. Still waiting on blood test results. Should I try for some sleep tablets in the meantime? Or go straight onto the Pregabalin? I’m tempted to go back on the pramipexole as I have some left over.

[lee_uk in reply to lee_uk]

Quick update. Ferritin came back at 256. Going to try 7 days of sleep tablets then switch to Pregabalin if nothing changes