After many years on Pramipexole and having reached the max dose (6 x 0.88mg), I suffered augmentation and visited my GP. The GP i saw was very sympathetic and started me on Pregablin whilst I reduced the dose of Pramipexole..
I managed okay(ish) until I got to 3 x 75mg of Pregabalin and 2 x .088mg Pramipexole which I titrated down very gradually, which is where I am at the moment and my symptoms are off the scale. Last night I had no sleep whatsoever. Additionally, I started with Edema which I have never had before and which started around the time I increased the dose to 225mg.
I visited my GP this morning and all he told me to do was to increase the Pramipiexole and reduce the Pregabalin - seems we are going round in circles - he said he wasn't prepared "to throw any other drugs at it".
I do all the suggested Magnesium / Iron etc....
I am at my wits end. I have spent ages reducing the Pramipexole, but at this stage am wondering if that is my only option?
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Ced60
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You are probably reducing the pramipexole too quickly. I would suggest you go back up to the last dose where your symptoms weren't so bad and then reduce by a much smaller amount over a longer period of time waiting for you symptoms to settle before reducing again. Also you may need a low dose opioid to help you through this period.
Pregabalin causes water retention and it does tend to settle after 2 or 3 months. However, if the Pregabalin side effects become unbearable, low dose opioids can be prescribed for RLS.You should stick with reducing Pramipexole as your RLS will never settle until you're off it. The augmentation ( increase in severity of RLS) will continue.
Sadly, Doctors aren't taught anything about RLS so your GPs comments aren't surprising. They show his complete lack of knowledge.
I suggest you print off the NICE cks guidance and the Mayo algorithm and ask your GP to do blood tests, help you get off Pramipexole by prescribing low dose opioids and refer you to a knowledgeable Neurologist if he's not willing to help you.
Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice. Improving your ferritin is one of the ways to help augmentation.
Hi Sue Many thanks for this , I have the result of my blood tests - my Transferrin Saturation Index is 17% , Serum Transferrin 2.36 g/L, Serum Iron Level 10,1 , Serum Ferritin 70ug/L - my GP advised that this is all within normal ranges and that no follow up is necessary. Please could you advise?
They are within normal range for patients without RLS but not for those of us with RLS. Your transferritin saturation should be at least 20% and it is advised to get an iron transfusion if it is not that. Unfortunately that can be hard to get in the UK. Joolsg recommends seeing a neurologist like Professor Walker at Queens Square who will consider transfusions. If you can't get a transfusion take two tablets of 325 mg of ferrous sulfate or two tablets of 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. ferrous sulfate is fine for most people but if it causes constipation then iron bisglycinate is less likely to do so. Take it every day at the same time so it is at least 24 hours apart, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. Ferrous sulfate is cheaper in the US and for most people does not cause constipation but iron bisglycinate is much less likely to. If your transferrin saturation is below 20, you may need an iron infusion. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take you iron at night. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. Improving your ferritin will help you get off pramipexole.
My sympathies to your RLS distress. I had a similar experience of severe symptoms getting off Pramipexole. It took two years of tapering off. It was helped with a combination of Methadone, Marijuana, and a variety of more holistic methods. I have heard that most have less RLS symptoms when the withdrawal symptoms stop perhaps two weeks after no Pramipexole. I have also heard that long term dopamine adrenergic users do not get much help from Pregabalin and the like (I did not). There is no guarantee that Pramipexole abstinence cures the disease. However, that is part of the Mayo Clinic algorithm used by many good RLS specialists like mine in the US. I do think the body can reset itself and then respond better to a lower dose again. Perhaps alternating medicine therapies every 10 days could help later. Hang in there.
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