Hello I'm John and have suffered rls for about 10 years. It has got gradually worse and now affects my arms and shoulders. I also suffer from severe body ache at night so my sleep is not good. I currently take 0.7 mg of pramipexole at night supplemented by quinine sulphate and amitryptolene. The medications are becoming less effective. Sometimes I take another 0.35mg of pramipexole to get relief. I worry about the future and wonder if other medications might be more effective?
Does anyone know of any specialists in rls in the Manchester area? Be grateful for any help.
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I am sorry, but not surprised, to hear of your travails. You are on a relatively high dose of pramipexole and it is very likely that augmentation caused by the pramipexole is causing your worsening symptoms.
Unfortunately to add insult to injury, amitriptyline is well known for exacerbating RLS so this might be contributing.
In your shoes I would consider eliminating the amitriptyline (unless you are taking it for some other condition in which case consult your GP). I would also get a serum ferritin test to check your iron levels as expert opinion is that these should be over 100.
Unfortunately, you will probably also need to eliminate pramipexole (very gradually) in order to return to your pre-medication symptoms. This is a tortuous process and will involve many nights of little to no sleep as the dose reduces. The only thing that will help at that stage is an opiate/opioid such as tramadol or OxyContin. It is possible to go through the process without the opioids but it is pure torture. Once you have eliminated the pramiprxole you can look for other treatments or management strategies.
Treatments could be an anti-convulsants such as pregabalin, opioids and/or iv iron. Management strategies such as dietary changes can be extremely helpful as, for example, Raffs - a forum stallworth who suffers severe Rls - who has found significant relief adopting a vegan diet. For a novel treatment strategy you could look at my own threads regarding dipyridamole. I should emphasise however that none of these will be effective until after you have eliminated pramipexole as augmentation trumps all treatments
I can’t advise you of an expert in your area. If you do some research yourself (look through posts on here - search ‘amitriptyline’ and ‘augmemtation’, look at the Johns Hopkins medical RLS section and at the patients questions page of Dr. Buchfuhrer’s website rlshelp.org - these are amongst the world leaders in rls treatment), you will probably find most of the answers yourself. Unfortunately with this condition it is a struggle to find members of the medical profession who are fully informed and this includes many sleep consultants and neurologists. It is important therefore to inform yourself as fully as possible to ensure they do not inadvertently put you on the wrong path.
Thanks for your advice. That's really helpful. Do you know how long it would take to eliminate pramipexole, given that I'm already taking 0.7mg per night?
I'll do the research you suggest then discuss with my GP. Thanks again.
I’m not sure how long to take. I am currently cutting out pregabalin and I am using a method of reducing by Aprox 10% every 10 days - so VERY gradual. I do wonder if I had gone that slowly when I came off pramipexole would it have gone easier for me. However, I don’t really think so as there does not seem to be a single person who eliminated pramipexole without at least 10 days of torture unless they used strong opioids. And even then it is unusual to get away without considerable misery.
I would hazard maybe 8 to 10 weeks. Maybe slightly less. I would stop using the top up 0.35mg immediately as that will only add to your problems if your body gets used to it. Maybe your GP would prescribe some tramadol to help you with breakthrough symptoms so you don’t need that.
If you can’t get tramadol there is also the (inevitably polarizing) dark side. Kratom (not legal in UK but can be ordered from Holland) is usually effective against Rls and is useful (if you are prepared to take the risk) as one of the few options which can be taken as-and-when. Others find some relief using cannabis (most often the high in thc - and therefore illegal - variety rather than the CBD oil - though some find that useful also).
Although not a recreational drug user at all, I have been driven to try both these options for my Rls and found the Kratom in particular very helpful and a lot less difficult to discontinue than opioids.
I don't live in the UK, but I think the medication I take is available there, its called Neurontin (gabapentin) and it has relieved my symptoms day and night
I would not be inclined to start neurontin or any other anti-convulsants until you have eliminated praimpexole. It won’t be strong enough to make a difference to your symptoms if you are augmented. It could work well ultimately (particularly in conjunction with raised serum ferritin) but not until pramipexole is completely washed out of your system.
I would definitely get a serum ferritin test asap and ask for the actual figure - they often tell you that you are ‘normal’ or ‘within range’ but the figures are very different for RLS sufferers - preferably over 100 - whereas ‘normal’ can be as low as 14.
Also, just to reiterate, do plenty of research and inform yourself well before going back to your GP.
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