I spoke to my GP this afternoon as I'm really struggling with what I believe is severe augmentation. I'm on pramipexole 2 tablets and 2 x 30/500g cocodamol each evening and have been taking cocodamol for years. The pramipexole was introduced last year as my GP ideally wanted me to stop taking the cocodamol due to the risk of addiction. But I found it really hard to cope with the RLS symptoms without it. Roll on to about 3 weeks ago and up to then, I could survive but the symptoms have always been there every evening. I don't know what changed but I now have symptoms 18 out of 24 hours every day. I can't sleep, can't even lie down and have the symptoms in my arms, legs and shoulder blades.
My GP tells me she can only treat me according to the NICE guidance and the Mayo Algorithm 'means nothing'. She was not interested in me mentioning anything about latest research. She suggested I took one more cocodamol tablet in the morning, and also took more Pramipexole.
I explained thinking had changed and pramipexole was no longer considered first line treatment.... She said all her RLS patients take it and augmentation isn't a known issue with this drug.
I'm desperate. I've not slept for weeks, feel awful and I'm not really coping. I can't even keep my legs still at my desk.
The GP did agree she would refer me to a neurologist but she doesn't know who to refer to specifically. Does anyone know of anyone they have seen and they'd recommend in Kent or London please? To see privately?
Thank you so much for any help.
Kind regards,
Deborah
Written by
MillieBerlin
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Oh, she also said I 'most certainly cannot take Gabapentin or Pregabalin'. She said these are serious drugs and would only be prescribed to someone in pain.
I hardly dare to suggest a neurologist/consultant who knows anything about RLS or at least any up to date information.
There is a Simon Merritt, a sleep specialist in your neck of the woods and he does include RLS in his clinical interests. esht.nhs.uk/person/simon-me...
He is listed at the top of a very short list that I have which only means he was the first contact given when one was started, a good few years ago now.
You definitely need a new doctor and I hope you can get an appointment with Dr. Simon Merritt. And yes, you are definitely suffering augmentation and need to come off the pramipexole. You can start doing that now while waiting for an appointment. To come off pramipexole, reduce by .088 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. If you find .088 is too much to reduce by you can get a pill cutter and split it in half or if even that is too much you can buy a jewelry scale that measures down to .01 gram ($11 in the US) and shave off a bit of the tablet and measure it. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it.
As you know dopamine agonists like pramipexole and ropinirole are no longer the first line treatment for RLS and that gabapentin or pregabalin are so hopefully your new doctor will prescribe one of them. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily."
If you haven't had your ferritin checked, ask your doctor for a full iron panel. Your current doctor might be willing to do this. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
I am so sorry you have such an ignorant doctor. I contacted Professor Walker of Queens Square. He prescribed my Buprenorphine. He is busy but is contactable and aware.Don't loose faith.
Hi Millie,Augmentation is most definitely a known issue with Pramipexole and extremely common.
NICE recommends Doctors advise their patients about Augmentation BEFORE prescribing them. So not only is your GP incorrect, but she is misquoting NICE.
I suggest you change GPs asap because your doctor is actually giving you dangerous,incorrect advice.
Copy of NICE guidelines below and a legal case against UK neurologist for failing to warn about the dangers of Pramipexole. Perhaps show this to your GP. It may force them to update their knowledge.
I also worry for all the other patients being treated incorrectly by this doctor. You should definitely write a formal complaint, listing NICE and NHS guidance and show your GP the training module by KISS, the largest GP training company in the UK. They specifically point out the dangers of Pramipexole and Ropinirole.
Please also make a report via the Yellow Card Scheme about your increased RLS on Pramipexole. Unless we all report this common side effect, GPs will keep prescribing Pramipexole and Ropinirole.
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