Hi All,

[Ex-rugbyplayer]

It’s really a sad state of affairs that in this day and age, apart from what the Mayo Clinic are producing, that GP’s and others know nothing about treating RLS.

If I was young and starting out again and becoming a doctor I would definitely do treatment/control of RLS. It is a niche market.

Anyway I have one night over me, whoopee, and it went well. My fear is as the week goes on and the reduction of Pramipexole kicks in it will get more uncomfortable. I suppose time will tell.

Thanks to all who have been in touch and I will keep posting on my progress on reducing my Pramipexole intake.

Hope you all stay safe.

[whitney2044]

Hello , After many decades struggling with RLS at the same age as you are now I lost my ability to cope with it, so I've been on Gabapentin for three years, as you I started on 100mg three a day and moved up to 200mg then 300mg x two a day with a reserve of some 100mg for backup in case 300mg x 2 wasn't enough, I found taking 300mg at lunchtime a 100mg early evening then 300mg at bedtime works best for me, I'm now able to manage with 2 x300mg missing the 100mg. I was mindful that if I went full dose's 300mg x 3 or more there's no where to go if it stops working if that makes sense. I've been so relieved on the medication its also cured my seasonal bad back problem, I never associated the pain with muscle spasms, but something the physio said when I was having treatment prior to gabapentin. So for me its a win win, I'm going to be 70 soon so its so nice to be able to exercise and not be in pain. Good luck I hope everything goes well for you

[bedith6 in reply to whitney2044]

Hello Did the Gabapentin ma ke you put weight on?

[Ex-rugbyplayer in reply to bedith6]

Hi,I have only been taking it for less than a week though the neurologist I saw warned me it was one of the side effects.

Since starting I have been careful what I’m eating.

[Joolsg]

Yep. That's why I started the campaign last summer to get it taught. The Royal College of GPs refused to add it to the curriculum and said most GPs undergo regular training & are up to date and will research if need be.That is total rubbish as we know.

GPs have never heard of augmentation or iron therapy and are still doling out dopamine agonists like sweeties without warning patients about Augmentation or ICD.

I rant about it a lot.

Next I'm planning a demonstration to the RCGPs and the HOP.

This disease affects 1 million in the UK, 100,000 severely and yet it's not taught.

The Association of British Neurologists acknowledge that it's not taught but say they're understaffed and overworked.

[Munroist in reply to Joolsg]

Understaffed and overworked was exactly the response I had from the neurologist I was referred to last year, as well as telling me I wasn’t part of their “core responsibilities” when like you say 1 million people suffer with this in England and sleep deprivation is a nasty condition which potentially leads to other issues like dementia. I do understand the NHS is and has been under a lot of pressure so I have refrained from writing back so far with what I really think but I’m going to pick up the matter of getting an infusion again now we are through Christmas and omicron seems to have stabilised. Thank you for continuing to push for RLS recognition.

[Lilcatfeet in reply to Munroist]

My neurologist claims iron infusions can have nasty side effects. She also claims to have studied RLS in med school, yet continues to prescribe das as first line treatment.

[LotteM in reply to Lilcatfeet]

Med school was probably some time ago for het, and things have moved on since then. But, boy, a difficult conversation with someone falling back on such arguments.

[Munroist in reply to Lilcatfeet]

Yes, well infusions and excess iron can cause some problems but generally it's manageable and the risks are definitely worth it for some people, especially the more seriously affected who are suffering with sleep deprivation. My neurologist mentioned DA's as well, some people manage on them but if you don't then the pain of withdrawal plus the apparent permanent damage they can do seems a lot more worrying the infusion risks. It's tough trying to tell professional people they are doing their job wrong, but we need to persist.

[Dotmowatee in reply to Joolsg]

My GP put me on Pramipexole after looking it up in her drug journal while I was sat with her. No idea about augmentation or side effects. Neither had the neurologist who I paid to see in Plymouth. My husband is a scientist, he was appalled when he made a joke about it. Do the medics profit from the drug companies?

[Joolsg in reply to Dotmowatee]

No not in the UK but I just wish they realised the increasing dangers of dopaminergic drugs

[Millersman in reply to Joolsg]

I once tried to explain augmentation to a NHS doctor by saying that the longer you take it (Pramipexole in this case) the more you will have to take. He told me that that was impossible!

[Joolsg in reply to Millersman]

Augmentation is actually an increase in intensity of RLS rather than increasing amounts of Pramipexole .BUT high doses of Pramipexole cause the increase in RLS symptoms.

[Millersman in reply to Joolsg]

But it's a vicious circle, if the intensity increases then the dosage increases to combat it.

[LotteM in reply to Millersman]

In case of augmentation it is not. As the worsening in that case is caused by the medicines (mainly dopamine agonists like pramipexole and ropinirole), actually a reduction in the medicine will also reduce symptoms. Specifically when symptoms have spread into daytime and other body parts.

[Joolsg in reply to Millersman]

You should NEVER increase the dose of Pramipexole if symptoms worsen.The ONLY solution is to get off it. This is the most common complication of Pramipexole and Ropinirole and hundreds of thousands of us have been through it.

Reduce the dose by half a 0.088mcg every 2 to 3 weeks.

Ask your GP to prescribe a low dose opioid like tramadol or Oxycontin to deal with the withdrawal symptoms.

Until you get off Pramipexole, your RLS will just become more and more severe.

Please read the pinned post on augmentation.

[Ex-rugbyplayer in reply to Joolsg]

Can’t argue with your post. My legs we’re getting worse my GP upped the dose. Augmentation and feeling the RLS had spread to my arms made me go see a neurologist. And of course reading peoples experience on the site.

[Joolsg in reply to Ex-rugbyplayer]

Sadly, even the majority if neurologists don't know much about RLS or augmentation. Useful to ask any neurologist before you see them how detailed their knowledge is.

My last one prescribed Amitriptyline because he knew nothing about meds that worsen RLS.

It's why it's so important to educate yourself, read everything you can and print out the research.

[Millersman in reply to Joolsg]

Thanks, I really appreciate your comments.

[Millersman]

I'm interested to know what pram dosage you're on and what you're trying to get down to?

[Ex-rugbyplayer in reply to Millersman]

I was on 1.83 though the neurologist I saw is reducing it by .26 each week for 3 weeks and supplementing it with gabapentin starting with 100 and moving up to 300 by the end of 3 weeks. This will leave me still on 1.05 of Pramipexole. We haven’t discussed the next step though he has asked me to make a telephone appointment with him in about a month. I want to see if I can come off it altogether.

[Joolsg in reply to Ex-rugbyplayer]

You may suffer bad withdrawals going that fast so maybe go more slowly.Someone recently posted about taking their Pramipexole to a 'compounding pharmacist' who ground up the pills and made them into a liquid so he could micro reduce by a tiny amount each week over 12 months or more to avoid withdrawal.

The anecdotal evidence on here is that the best way is to reduce by half a 0.088mcg pill every 2 to 3 weeks and to take an opioid like tramadol if symptoms are difficult.

Best of luck.

[SueJohnson in reply to Millersman]

The usual recommendation is to reduce by .125 every few weeks.

[Ex-rugbyplayer in reply to SueJohnson]

Hi Sue,Thanks for your post.

My neurologist is reducing me by .26 each week for 3 weeks and added gabapentin increasing from 100 first week to 300 by start of 3rd week.

[Ex-rugbyplayer]

Hi all,It’s been a nearly a week since I reduced my Pramipexole by.26 and started on Gabapentin 100. I feel I have been very lucky,so far, as apart from the odd nights restlessness I have had no bad effects. In saying that I’m dropping another.26 Pramipexole and increasing my gabapentin to 200. Fingers crossed for the next 7 days.

Thanks to all for the advice and the support it’s been great to know that you are all there.