I have had RLS since the 1970s. Some years ago I had augmentation. At the time I was taking the maximum recommended dose of Pramipexole, .75mg. My neurologist addressed it by a pramipexole vacation and prescribed carbidopa levodopa for 3 months. Seemed odd as it is a dopamine drug but it worked to knock back the symptoms to the evening. . Then over time I started adapting and required higher and higher doses. I've now taken 1.5mg a day for the past 4 or 5 years, which is way high and augmenting again.
I wish to wean off of pramipexole, I think it makes me impulsive and I am bothered that I need such a high dose. My current doc started me a few days ago at .75mg pramipexole plus 100mg gabapentin. Low dose to start because I am a senior. Unfortunately, I am battling RLS now every afternoon into evening. But, eventually I am able to sleep in the evening. All iron markers are in the normal range.
Anyone else taking such a high dose of pramipexole? How did you get off of it? Or not get off of it? I am a little unsure of my doctor. She is extremely patronizing but well recommended.
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lessergoldfinch
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The maximum recommended dose for RLS is .5 mg not .75.
To come off pramipexole, reduce by .125 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. Dopamine agonists like pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. Normally one would 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 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. Most of the side effects of gabapentin 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 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 daily." Some people do start gabapentin while weaning of a DA as you have. In that case they usually go up to 900 mg and then stay there until they are off pramipexole for several weeks and their symptoms have settled.
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.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 for an iron infusion to quickly bring it up as this will help your withdrawal. 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 at Https://mayoclinicproceedings.org/a...
Sorry to hear you are going through this. You certainly are in good company here. Many of us, myself included were on higher doses of dopamine agonists and experienced augmentation. Weaning slowly, and I can not emphasize slowly enough, is key to success. It took me over 2 years to completely get off a DA. I was cutting the tiny pills into slivers at the end. Over time, DA’s permanently impact the dopamine receptors in your brain which make it necessary to have another treatment in place while you wean off Pramipexole.
This will not be easy but it will be worth it in the end. Your Gabapentin dosage is too low. I hope your doctor can work with you on that. Good luck friend!
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.
You have received good advice from Sue.There are two schools of thought about withdrawal. Johns Hopkins advocates a rapid 3 week withdrawal, without any meds to help. Not many people are strong enough physically and mentally to survive that!
The other advocates a very slow withdrawal over at least 6 months. In your case, as you've been on these drugs for a long time, above the FDA max dose, you should go slowly.
Starting gabapentin now may be a little premature, as it doesn't stop the withdrawal symptoms. Usually, a low dose opioid is given to settle withdrawal symptoms which flare up at each dose reduction.
Gabapentin works once you've been off Pramipexole for about 2 weeks.
Follow Sue's advice and your doctor can help reduce symptoms by ensuring your serum ferritin is above 100, preferably 200.
Read this article by Dr William Ondo, which explains about augmentation on Dopamine agonists.
As a recovering RLS patient who experienced Augmentation, my advice is to print out the Mayo Clinic article and give it to your PCP. If possible, get into to see a Sleep Specialist. Most PCPs are not aware of the ramifacations of treating RLS with Pramipexole for years. The Sleep Specialist who eventually helped me was associated with the Pulmonolgy practice that treats me for Sleep Apnea. It was like night and day comparing her treatment to my PCP. Everything that SueJohnson advises is relavant. My Iron levels came back as normal when you see the normal levels as reported on your lab results. These do not apply to the iron levels that are described in the Mayo Clinic article on the Management of RLS. My experience was multi-faceted in treating me with Gabapentin as i was weaned off of the Pramipexole concurrent with Oral Iron Therapy of 325mg of Ferosol twice a day accompamied with doses of 1000mg of vitamin C. So, it is difficult to say which treatment finally created the "Secret Sauce" that finally relieved my symptoms that were a result of augmentation. During withdrawal from the Dopamine Agonist, my night times were horrific. I experienced full body RLS that started around 11 p.m. and continued to 2 or 3 a.m. This went on for about 1 month. I was ready to leap off of the tallest building I could find if I thought it would help. I'm not saying that I was suicidal but I was desparate and considered many of the recommendations that SueJohnson gives us in her 2nd reply. So, I gave up wine and caffiene. I weaned myself off of Fluoxetine. My PCP did not resond to my request for a replacement anti-depressant for reasons I still do not understand. Eventually, my Sleep Specialist encouraged me to request Wellbutrin from the PCP as it is the only antidepressenat that does not exacerbate RLS symtoms. It has been 6 months since my Augmentation began and 3 months since the combination of Iron Therapy, 1200 mg of Gabapentin (taken as 600 mg at dinner and 600 mg at bedtime) have given me relief from RLS. I occasionally have breakthrough symptoms. That may be due to the on-going withdrawal from 12 years of DA therapy which can last from 36 to 52 weeks. It is possible that eating in restaraunts may introduce substances that I would typically avoid so I advise watching what you order so that little to no caffiene is included. I encourage you to ask your PCP to seek continuting education on the treatment of RLS so that he/she is prepared when a patient presents with the symptoms and can avoid the Augmentation situation all together.
Thanks for all the comments. Am going to discuss with my doc, who is a sleep specialist (I have a number of sleep disorders) . Over the years I have learned to avoid alcohol, caffeine and late in day exercise. I take magnesium, though not sure that makes any difference and Mayo article says no evidence to support. Just had an iron panel done:
If you can't get an iron infusion, and I would push for one, take 325 mg of ferrous sulfate or 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 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 live in the US ferrous sulfate is cheaper and for most people does not cause constipation but iron bisglycinate is much less likely to. 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 its absorption 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. 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 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion.
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