Pramipexole

[Mike-tyson]

I have now stopped Gabapentin and been prescribed Pramipexole which works very well on my restless legs but still get tired & a bit dizzy at times. As my doc would not give me 300mg x 2 per day which I needed. So Pramipexole is working for me at the moment 😊😊

[SueJohnson]

You need a new doctor even if it means you go private and have to pay. For s/he not to give you more gabapentin and instead put you on pramipexole on which up to 70% of people will suffer augmentation is almost criminal. I assume s/he wouldn't read the Mayo Clinic Updated Algorithm on RLS either.

[Madlegs1]

Be seeing you.🤔

[Joolsg]

I'd simply repeat the advice we gave you 4 months ago. Putting an 82 year old on Pramipexole is a mistake. You will experience worsening at some stage. Going through withdrawal in your mid to late 80s will inevitably cause falls and injury. Even staying at the lowest dose is risky. Whatever you do, don't increase the dose when it stops working. Studies suggest Pramipexole induced worsening of RLS (augmentation) rates are lower than we actually see on here!I suspect rates of drug induced worsening of RLS on Pramipexole are around 85-90% but most people fail to report via the Yellow Card Scheme.I would insist on going back on either gabapentin or pregabalin at the average dose set out in RLSUK website. If the reason it was stopped is dizziness, you could ask for iron pills/iron infusion to get your serum ferritin above 100, preferably 200. Dizziness is very common on gabapentin/pregabalin BUT it does settle after 2 months. Taking at night only reduces daytime dizziness.

Alternatively, a low dose, long lasting opioid might be better for you.

If you could afford to see a private specialist, it would be worth it. Dr Jose Thomas at Gwent sleep Clinic in S. Wales is excellent.

[Jumpey in reply to Joolsg]

Where is this clinic Jools? I can't find it through Google. I live in what was Gwent and would like to research this place.

[Jumpey in reply to Joolsg]

I have just found it.It is called the Aneurin Bevan Sleep Clinic and it is in Abergavenny South Wales.

[Joolsg in reply to Jumpey]

That's the one! Dr Thomas is the first UK doctor I've come across who actually researches the disease, follows the Mayo Algorithm, knows the benefits of iron infusions( and their safety) & he no longer prescribes dopamine agonists. He prescribes methadone or Buprenorphine for refractory RLS.

[Aujamw in reply to Joolsg]

Joolsg, I have been reading on here lately several suggesting a Ferritin of 100-200. I am just wondering if there is anything in writing suggesting to be over 100. Even though I have been to Mayo Clinic Rochester and they recommended mine to be over 100, I have been having a difficult time trying to explain to my PCP the need to be higher. Before going to Mayo Clinic my PCP tried to tell me that a Ferritim of 50 was normal. I have just about lost all faith in the medical profession. As many of you know I augmented on pramipexole with a dose of 3 mg. My life has never been the same. It has been 3 months since my last dose of pramipexole and I am now at least sleeping with the help of cannabis gummies. Anyone else out there have symptoms of cold intolerance or weakness in thighs? Both are EXTREME and I am about ready to give up! Little did I know that I was still going to be plagued with issues. Much of what I read suggest that DAWS(dopamine agonist withdrawal syndrome) could last month or years. The only suggestion they gave me at Mayo was to get back on pramipexole and try to wean back off. This in an effort to relieve my symptoms. At the same time they told me I would most probably be on it for the rest of my life.if I did restart it Knowing what I know and I am assuming they know -I'm not sure why they would recommend this! And there is no way I'm going back on ANY dopamine drugs! Fearing that my dopamine receptors were damaged, I fear that my brain is not functioning--at least the dopamine is not. I read that when you are on dopamine drugs your own bodies dopamine stops producing. I am having a very difficult time as I just plain don't feel like doing anything. I'm sure since dopamine is the feel good chemical that is why any help anyone suggest I would appreciate it! I did receive an iron infusion a few months ago and it very slowly has made a little difference but I am still struggling!

[Mipilimi]

🙏🙏🙏🙏

[Aujamw in reply to Mipilimi]

Thank you for prayers! I am feeling hopeless!