I started taking Mirapexin in 2002. My dose increased over the years, reaching 5 x 0.088 mg tablets four years ago when augmentation set in. Three years ago, my doctor prescribed pregabalin and allowed me to manage my transition from Mirapexin. I have not yet completed that transition.
Today, I take 400 mg of pregabalin and 1.5 Mirapexin tablets. These two doses worked well with almost no RLS symptoms for many weeks.
However, my symptoms became severe when I reduced Mirapexin to one tablet. I even tried 1.25 pills without any luck. When I returned to 1.5 tablets, my symptoms remained severe, perhaps indicating that augmentation had set in again.
I must go ‘cold turkey’ and would like views on the following approach: Increase the pregabalin to the maximum of 450 mg and then reduce Mirapexin to zero over a couple of weeks (potentially reducing the pregabalin dose later). If this makes sense, how long should I give between increasing pregabalin and reducing Mirapexin? If it does not make sense, please let me have your views on an alternative way forward.
Many thanks in advance for any advice anyone would like to offer.
Note: My blood tests regarding the ‘normal’ RLS indicators (iron, etc.) are all good.
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MrVimes
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Unless you really like to suffer I would not go cold turkey. Instead I would suggest you go back up on the mirapex dose to perhaps 1 and 3/4 tablets. Then I would buy 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. Yes it will take longer but you won't suffer. Alternatively get a low dose opioid from your doctor and reduce by 1/2 a pill every 2 weeks. I wouldn't increase the pregabalin in either case as it won't fully help until you are off mirapex by several weeks especially since you are so close to the maximum.
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, eating late at night, estrogen including HRT, 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, vibration devices, 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.
Thank you, Sue, for your advice. I really like your suggestion on dose reduction and will do as you advise.
Also, thank you for the list of 'good' and 'bad' things for RLS. I will look into any that are new to me and see if they help.
In terms of supplements, the ones I take are all related to trying to help with my RLS symptoms. They are Vitamin B12 (I take this at the same time as I take Mirapexin and Pregabolin), magnesium bisglycinate (I take these when I go to bed and over three hours after the RLS medication) and Iron Bisglycinate (I take these every other day when I wake to ensure they are taken on an empty stomach).
Aside from supplements, I am on 20 mg of Atorvastatin for high cholesterol (which is gene-related as I eat the proper diet, am not overweight, and get plenty of exercise).
You mention that pregabalin won't fully help until I am off Mirapex. By that, I am assuming you believe that it does help to some degree while I am taking Mirapex and am, therefore, hopeful that once I am completely off Mirapex, I can reduce my pregabalin dose. Do you think that may be the case?
All statins such Atorvastatin as 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 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.
You should take your iron tablets at night since iron is taken up by the brain later at night. Take it with 100 mg of vitamin C or some orange juice since that helps its absorption. As you are aware take it 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. Since you take magnesium take it at least 2 hours apart since they interfere with the absorption of iron. The same is true with calcium or zinc including in a multivitamin. Also antacids interfere with the 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.
Thank you, Sue. More excellent advice and ideas to consider and implement!
I have recently convinced my doctor to reduce my statins from 20 mg to 10 mg with a new blood test after three months. I am hopeful that the lower dose will control my cholesterol. After three months, I will consider what to do next based on the results. I will keep your advice in mind at that time. Going vegan will be my option of last resort.
The iron tablets I take have vitamin C included, and I will look at an alternative time for taking them per your suggestions.
I happen to have the sort of scales you suggested for weighing my Mirapexin tablets. They weigh just over 0.08 g each. It seems to me that when reducing from five to four and four to three tablets, as a percentage of the total, half a tablet is much less than when reducing from two to one, for example. Therefore, I plan to reduce my dose by 1/8 a tablet weekly, starting from 1 7/8 of a tablet. This should get me off Mirapexin by the end of November. I will report back to this group on how I get on with this and whether I suffer the extreme problems people report for two to three weeks after coming off Mirapexin completely. It will be an interesting experiment!
The last two nights of taking 1 7/8 tablet has resulted in a perfect night's sleep!
Thanks again for all you do to help people in this forum. You are very much appreciated.
Pregabalin doesn't help while you're still on Pramipexole. 5 × 0.088 is 1.25 mg. So instead of reducing the dose, you've actually increased it up to 1.5mg.
Augmentation is caused by hyper stimulation/excitement of D1 dopamine receptors. That will continue until you are off Pramipexole completely. It is the ONLY solution. 400mg is also too high a dose of pregabalin. You have increased the dose in the hope of settling the RLS. It will never settle while you're on Pramipexole.
Reduce Pramipexole as advised by SueJohnson.
If withdrawals are too difficult, ask GP for a low dose opioid.
Consider a complaint to whoever increased the Pramipexole. Until we start complaining about negligent and poor treatment, it will continue.
Thank you, Jools, for your advice. I am a bit confused with your opening sentence. The tablets I take each contain 0.125 mg pramipexole dihydrochloride monohydrate, which is equivalent to 0.088 mg pramipexole. So, I am not sure where you get 1.25 mg from. I also do not understand why you say I have increased my dose when I have reduced my tablets from five down to 1.5.
Thank you for making it clear to me that I MUST get off pramipexole. I have had that goal in mind for three years, but I am struggling. I will follow Sue's advice and get off the wretched drug.
The UK consultant I saw back in 2002 who put me on Mirapexin is likely retired by now, and the GP who agreed to increase the dose constantly is certainly 'retired' - forcibly retired due to gross incompetency (unrelated to my situation). All that is now water under the bridge - I know what I must do, and I will do it.
I thought you meant 1.5mg of mirapex, not 1.5 pills. (I also am wrong about the 1.25mg. I had forgotten the 0.088 contained .125mg. I had .250 in my head! You were on .750mg in total. )
You are nearly at the end then.
If you reduce half a pill every 2 weeks, you will be off Mirapex by mid October.
I would suggest you arrange 2 or 3 weeks holiday for when you drop the last dose.
The 3 weeks after the last dose is extremely difficult. You will have at least 4 or 5 days with little to no sleep and very severe RLS. Don't give up. It is hell, and only a few manage without severe withdrawal symptoms, but once through withdrawal, the RLS settles to what it was before you started dopamine agonists.
The pregabalin should then hopefully start to cover the RLS.
If it doesn't, go back to your GP or see a sleep doctor or neurologist as you may need a low dose opioid.
I found cannabis to be the best help during withdrawal. Medical cannabis is now available from private clinics in the UK.
No reason to apologise; your advice has helped many people on this forum, myself included.
I plan to follow the advice from Sue as I happen to have the sort of scales she suggested for weighing my Mirapexin tablets. They weigh just over 0.08 g each. It seems to me that when reducing from five to four and four to three tablets, as a percentage of the total, half a tablet is much less than when reducing from two to one, for example. Therefore, I plan to reduce my dose by 1/8 a tablet weekly, starting from 1 7/8 of a tablet. This should get me off Mirapexin by the end of November. I will report back to this group on how I get on with this and whether I suffer the extreme problems people report for two to three weeks after coming off Mirapexin completely. It will be an interesting experiment!
Since I am retired, I am happy to report that I am on a permanent holiday!
Thanks again for your help and assistance; it is very much appreciated.
I hope it goes well. I suggest you keep a withdrawal diary and video any severe nights. Showing these videos to our GPs will help them realise that it's easy to write a prescription for these meds, but it's not easy to get off them.Good luck.
You says your blood tests on iron were good but did you have your ferritin tested? If so what was it? If you don't know ask your doctor for it. Doctors will say your ferritin is fine when what is fine for others isn't fine for those of us with RLS. And did you stop taking any iron supplements 48 hours before the test, not eat a heavy meat meal the night before, fast after midnight and had your test in the morning before 9 am if possible? If not then it is not an accurate indicator of your ferritin. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If it isn't then post them here and we can give you some advice. If your ferritin wasn't tested ask for a full iron panel.
Thanks again, Sue. In July 2022, my ferritin levels were tested for the first time. They were at 99 micrograms/L. I started taking Iron bisglycinate at that time as I knew a reading over 100 was recommended. In February 2023, the same test yielded 119 micrograms/L; in July of this year, it was at 136 micrograms/L. So, the supplements appear to be working. However, although each test was a fasting test, I did not stop taking the supplements for 48 hours before the test.
I am due a repeat cholesterol test in about three months' time. I will ask for my ferritin to be tested again at that time and stop taking the supplements 48 hours before.
Honestly if I was you I'd come off pregabalin and try find something else. Going by what I experienced on them and coming off them I just tell everyone to stay away
Thank you for your advice. I am curious as to what your experiences were. Would you be willing to share them here? Did you switch to gabapentin or some other drug?
I too weaned off pramipexole last year, and then the drug holiday. Where did they come up with that name? The drug holiday is far from it. I experienced one-to-two weeks of 1-2 hours of sleep. I am pleased I am retired, yet I sympathize with those who continue to work and have young families. My husband is very supportive of me. Then, the previous neurologist prescribed Methadone at a small dosage, 2.5 to begin with, then I increased it to 5 mg. I ended the prescription one month after I began, due to the misunderstanding and the clarification of why I was on it. I had exhausted all RLS medications and augmented. He wasn't as clear as the importance of Methadone, and after weaning off of that, which resulted in huge depression, our 15 year old dog had died, my GP said the neurologist was way too aggressive to taper down and off from it. I won't go into further detail, but the pramipexole is wicked stuff. This forum is here for you when you are on the drug holiday. Best of luck to you.
I plan to follow the advice from Sue as I happen to have the sort of scales she suggested for weighing my Mirapexin tablets. They weigh just over 0.08 g each. It seems to me that when reducing from five to four and four to three tablets, as a percentage of the total, half a tablet is much less than when reducing from two to one, for example. Therefore, I plan to reduce my dose by 1/8 a tablet weekly, starting from 1 7/8 of a tablet. This should get me off Mirapexin by the end of November. I will report back to this group on how I get on with this and whether I suffer the extreme problems people report for two to three weeks after coming off Mirapexin completely. It will be an interesting experiment!
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