reducing Pramipexole plan?

[phantom388]

hi everyone, I have been on pramipexole around three years, and very slowly. I notice I am getting the RLS appear earlier in the evening, and sometimes during the night. I guess reading other posts, this could be the start of augmentation. I really don’t want to take a higher dose, and I don’t particularly like some of the side effects of pramipexole, so I’m going to put in place a plan to come off it. Ideally I’m going to try and manage eventually without medication, through natural means, which may or may not work, but I want to at least try. It would be good to confirm with you all, how long I should take, and at what level of dosage. Currently I take .088 mg around 10pm and half of that tablet - 0.044 mg around 5.30pm. I was thinking of reducing the 10pm dose to 0.044mg every other day for 4 weeks, then try and drop the 5pm tablet every other day for a further 4 weeks, finally dropping down to a half tablet 0.044mg for 4 weeks before finishing. Assuming I can manage this does that sound reasonable?

Thanks very much

[SueJohnson]

That is certainly reasonable. It is slower than the usual recommendation. Even so you will have increased symptoms. 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. 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 in a multivitamin 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 advice.

[phantom388 in reply to SueJohnson]

thanks Sue - much appreciated, I will go through the list - I did consider gaba or pregab which many of you talk about, but they also seem to have their own side effects. If I can’t make it work then I may well try these, but let’s work with your list and see how it goes. My most recent iron test showed a ferratin level of around 113, and so that seems a good starting point?

[SueJohnson in reply to phantom388]

Yep.

[SueJohnson]

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, playing and listening to music, meditation, creative hobbies 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.

[DataRN]

You need to reduce it slooowly. It took me 3 years to reduce from 4mg to 0. In the end I was literally shaving pieces of the tablets. Dr. Winkelman explained to me that after years of use, DA’s have basically wrecked the receptors in your brain. Also, as you get to the very end, you will likely need something to help you for a month or so such as Gabapentin or Lyrica. Good luck to you!!

[tagaxel]

Pramipexole will ultimately lead to augmentation. When I tried to get off pramipexole I went into incredible withdrawal called DAWS – Dopamine Agonist Withdrawal Syndrome. I am controlling my RLS with a relatively new drug called Horizant. I am tapering from pramipexole but it requires the use of a compounding pharmacist. I have been tapering for over a year and I figure it will take at least another two years for me to get off the drug completely. If you need help figuring out how to have the drug compounded please contact me. I can see by your dosage level you are not in the USA so I will have to try to make the appropriate calculations.