At present i take the max dose of 3 pramipexole, ad 2 Pregablin, just been back on the pregablin for about 10 days, but it’s not working , haven’t slept in 48 Hrs. Have tried every thing from reducing the Pramipexole gradually although not such long intervals as some do, and going cold Turkey, which i have done twice, with horrendous side effects, but going back on it i have had relief and have gone as long as 18mths before it all kicks off. Haven’t tried just pregabalin on it’s own.
We have just moved and i have had to register with a new Dr so i have know idea how well educated they will be with restless legs.
I have been on iron for many yrs due to anemia, and i mentioned the iron infusion , my Dr contacted the hosp, but they wouldn’t entertain it, it seems we have a battle on our hands what ever we try to do to help ourselves.
The pregabalin takes 3 weeks to be fully effective and won't be fully effective until you are off the pramipexole and your symptoms have settled. Obviously you are augmenting. To come off the 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. 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. If that is still too much to reduce, you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
The beginning dose of pregabalin is usually 75 mg pregabalin (you don't say what size your capsules are but I suspect they are 25 mg). Normally you would start it 3 weeks before you are off pramipexole . After you are off pramipexole and your symptoms have settled increase it by 25 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. Most of the side effects of 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin daily."
Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. 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 your new doctor for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your new doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at mayoclinicproceedings.org/a...
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, fennel, 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, CBD, 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 take 2 50mg pregablin at night, prescribed 4 a day but 2 in the morning which I don't take, so only 100mg at night.I simvistatin 20mg, Omeprazole 20mg one in the morning, fluoxetine 20mg , extoricoxib 2 30mg tabs Ferrous fumarate 20mg, perindipol and indapamide once a day. 75 mg of Aspirin.
Omeprazole is a proton pump inhibitor and RLS-UK says most of them make RLS worse. In addition they interfere with the absorption of iron and magnesium. There are several antacids that are safe for RLS: Gaviscon Extra Strength Tablets and Liquids and there is Tums and Rennie, Mylanta, Maalox, Alka-Seltzer,and Rolaids. Do not just stop taking omeprazole but you can switch directly to Gaviscon.
Fluoxetine is an SSRI antidepressant and is known to make RLS worse. Safe anti depressants include trazodone and Wellbutrin (zyban). Trazodone also helps anxiety and insomnia.
Indapamide is a diuretic and diuretics make RLS worse. Unfortunately there are no safe ones.
Simvistatin is a statin and statins make RLS worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS although the FDA does show it increases RLS for some people and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
Perindipol is an ace inhibitor and is OK.
I can't find anything about extoricoxib but it is probably OK.
Even though you are anemic and taking iron tablets you really should find out what your ferritin is as what is needed for anemia is not enough for RLS. On the ferrous fumarate tablets normally they would be 210 mg which has 65 mg of elemental iron. Check how much elemental iron are in the tablets you are taking. You probably know this but just in case you don't. take your iron tables with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day 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. If you take magnesium, calcium or zinc take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with the absorption as I mentioned so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after after 3 months since you are taking iron tablets or 8 weeks if you have an iron infusion.
This is the NHS , trying to do all these things, you’d have to jump through hoops, getting a Drs appointment is difficult enough, i shall and gradually come off the pramipexol and carry on with the the gabepentin.
Others have done it. After all this is a UK forum although others are on it from different countries. I thought you were on pregabalin not gabapentin. The instructions for taking gabapentin are different.
Pramipexole invariably worsens RLS. As you realise, coming off it simply delays the inevitable worsening. It's because your D1 dopamine receptors are screaming out for their hit of dopamine. Your RLS will never settle until you get off Pramipexole completely and give Pregabalin time to work. The withdrawal takes over a month for symptoms to settle. Then Pregabalin takes at least 3 to 4 weeks to work.Start Pregabalin about 4 weeks before you stop Pramipexole completely. Also try to see a sleep specialist with knowledge of RLS who will prescribe an iron infusion.
Pregabalin often doesn't work for those who have been on Pramipexole or Ropinirole for years, as the dopamine receptors have probably suffered permanent damage.
The RLS is then regarded as Refractory and you may need a long lasting low dose opioid like Buprenorphine.
Sadly, RLS isn't taught at ANY stage in medical training and GPs have no idea how to treat it or about augmentation on Pramipexole. Ask your NEW GP to look at RLS-UK website, particularly the section on augmentation.
Start reducing Pramipexole again and ask your GP for a low dose opioid to help the withdrawal symptoms with each dose reduction.
Try to see Dr Jose Thomas at Gwent sleep clinic as he does know how to treat RLS effectively. He does iron infusions and prescribes methadone for severe RLS.
Unfortunately doctors today are a bunch of robots who cannot think for themselves. They can only give out a prescription drug and have no idea what the side effect will be on a patient. I have had RLS my whole life and have not found one doctor that had a clue on what causes it. As for what helps it....I think everyone is different but I use medical marijuana and can finally get a good night sleep. I recently discovered that niacin helps me. I take niacinamide from Dr. Mercola. I discovered by accident that coffee settles my legs and coffee contains niacin.
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