I have been following the group for a number of months and have learned a lot about my condition, so thankyou to everyone here. I am now reaching out for guidance and help as I have been struggling a lot over the last couple of year or so.
As background/history, I am a 65 year male and live in Ontario, Canada in the Hamilton area. I have had RLS for most of my adult life and was first prescribed Pramipexole about 30 years ago. It worked beautifully. I would take (3) .125mg pills at dinner time and life was good. About 5 years ago, I started to increase my daily dose to 5 pills and then about a year ago, I was up to 8 pills (i.e 1mg total) as my symptoms were starting by early afternoon and affecting my whole body at times. I later learned that I had likely run into the augmentation of my dopamine agonist drug.
August last year, my doctor prescribed gabapentin with a plan to reduce pramipexole and ramp up the gabapentin to up to 1800 mg over the course of a few weeks. After some time I was down to .25mg Pram and up to 1800mg gab but still REALLY struggling with symptoms and sleep. In February after consultation with my doctor we transitioned to pregabalin hoping it would work better. I’m currently taking 150mg at 5:30pm followed by another 150mg at 9pm and .125mg of pramipexole also at 9pm. Also beginning early February, I also take 1mg of Hydromorphone (fast acting) when I go to bed. In summary, I am struggling with sleep problems (having trouble getting to sleep and very restless sleep when I do with body twitches, etc. I am finding it very hard to function with so little sleep).
Ps: I have had my iron panel checked and it is not a problem as per this group’s guidance.
So I have a couple of questions:
1) Is there a world where I stay on a low dose (.125mg) of pramipexole or is it the reason I continue to have so many problems?? I know about the groups guidance to wean off slowly but am concerned about getting through this as things are already so bad and when I tried last fall I was going bananas.
2) I never hear of anyone in the group using hydromorphone yet I hear of people using many other types of opioids such as Buprenorphine. Can anyone speak to hydromorphone and its suitability for RLS treatment.
Of course I would very much appreciate any feedback and suggestions. Sorry for the long message however I wanted to try to provide a complete picture. I look forward to getting some feedback.
Thankyou!
Bobby
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Bikerguy1
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Sadly, while you are still on ANY dopamine agonist, your D1 receptors will be up regulated and screaming for their 'hit' of dopamine. That's what causes the severe, increased RLS. If you stay on even a low dose, it will keep breaking through any med you take, so it's best to get off it completely. Your dopamine receptors will never get the chance to settle and, hopefully, repair until you're off Pramipexole.You were on double the maximum dose and your doctor should have refused to increase when your RLS became worse, as Augmentation is well recorded and researched. Do consider legal action because money talks louder than our suffering.
You had a fast withdrawal. Most people on high dose dopamine agonists and on them for 30 years are advised to take at least 6 months to taper down.
However, you've managed to get down to 0.125(0.088) so stay on that for 2 weeks, then cut in half and reduce again.
Gabapentin won't cover the increased RLS or the withdrawal symptoms until around a month after your last dose of Pramipexole.
Any opioid will help the severe withdrawals, including hydromorphine, but anecdotal reports on this forum show that methadone or Buprenorphine can completely stop the symptoms and help you off Pramipexole.
Ask your doctors if they will prescribe Methadone or Buprenorphine.
And file a report about augmentation and the severe withdrawal symptoms to the FDA in the USA and the Canadian equivalent.
Doctors will keep prescribing dopamine agonists until they realise the medical crisis/scandal they have caused.
Thankyou Joolsg for taking the time to respond and provide this useful information. It is very much appreciated! I will endeavour to get off pramipexole and will meet with my doctor to discuss opioid options. Regards...Bobby
Hydromorphine needs to be taken every 3 to 6 hours or you will have mini withdrawals so switching to buprenorphine or methadone which last much longer will help.
To make your final withdrawal easier you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (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 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.
Sue, thanks very much for responding and providing your input! I will endeavour to get off pramipexole and review opioid options with my doctor. Hoping that life after pramipexole gets back on track. Also, thanks for your helping this community with your knowledge and experience . Regards Bobby
I too suffer from RLS and wandered into the world of augmentation with pramipexole however my regime at present is 3 x .125 pramipexole per day (one in the morning, one at 4pm and one at 9pm and at 9pm I use the Tens Comfytemp for 15 mins on each leg just below and behind the knee. I get a good nights sleep.
It works for me but i personally think was a good investment
I understand the arguments re augmentation and hope to wean further off the pramipexole but so far no augmentation after a year on the Tens
Hi I’ve been on pramipexole for approx ten years and have always staggered the dosage. One of my gp’s stupidly increased my dosage from 3 to 5 tablets s day and then my usual gp said the maximum dosage should be only three tablets per day . Im guessing that is based on the 0.18mg tabs which I am on. No apology from other gp for his mistake 🥴
Sorry i mistakenly said previously that my tablets were .125 that was incorrect
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