Hi, I’ve been reading up on the withdrawal effects of coming off Pramipexole but I’ve had augmentation for years now so I need to do this. I’ve had RLS for around 25 yrs and have been on Pramipexole for about 20 of them.
I went to my GP about 3 yrs ago with this problem and he advised me to just stop taking it, which I did…..48hrs later with no sleep and horrendous leg pain I commenced back on them.
I have an appointment in 3 days with the GP again to discuss coming off them safely.
I currently take 0.088mg TDS and 75mg Pregabalin BD.
I’ve read to reduce them by 0.125mg but I don’t take that much. Can anyone advise what I should do please and if I should increase tmy Pregabalin?
I’m in England and I find RLS is still very misunderstood by the medical professionals 😡
Thank you
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Cookiebum24
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Welcome to the forum. You will find lots of help, support and understanding here.
The .125 you have read about is how pramipexole is in the US. The UK equivalent is .088.To come off pramipexole, reduce by half of a .088 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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. 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
On the pregabalin, it won't be fully effective until you are off pramipexole for several weeks. After that increase it by 25 mg pregabalin every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. You don't need it twice a day once you are off pramipexole since your symptoms will only be at night. . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg of pregabalin."
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, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. 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. 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 doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist a at Https://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(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
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 don’t take any other medications except for the contraceptive pill.
I will ask the GP for codeine as I’ve used it in the past during exacerbations of my RLS.
I really hope you are right and my daytime symptoms stop once I have cleared pramipexole out of my system 🤞but I’m afraid to cut down on the Pregabalin until then.
I’m back from the GP. She has given me codeine and Mirtazapine. She hopes the mirtazapine will help me sleep.
Can you tell me if f mirtazapine is ok or if it will make my symptoms worse?
I’m having a full blood screening too and I made her aware of what my Ferratin level should be.
She was very understanding and wants me to come back in 6 weeks for a review (or sooner if I’m struggling).
I’m only 4 days into reducing my Pramipexole and I’m already experiencing withdrawal symptoms. My legs are constantly aching and I’m being woken in pain.
Other than your ferritin, the values are fine but you want to raise your ferritin above 100 and preferably even higher. Take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) 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 you have problems with constipation, iron bisglycinate is better. 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, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout.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. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
I agree with Sue. It can take several months after stopping Pramipexole for the severe RLS to settle. If 150/200mg of pregabalin doesn't help, you can slowly increase up to 450mg.If pregabalin doesn't help after several months, a low dose, long half life opioid like Buprenorphine can be tried.
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