Update
Been OK for a while say 6 months on 2 x 0.088mg of pramipexole. Until last few weeks as soon as I go to bed RLS starts in arms and legs . I'm taking magnesium citrate, iron patches as advised on here too. I know my GP doesn't know anything about it as my aunties have it and say the gp doesn't know what to with them!!
I'm obvious augmenting but what do I do next?? Trying to work with no sleep is not good. Any advice appreciated.
Sometimes one builds a tolerance to this medication and dosage has to be increased. You need to discuss this with your dr. Do not make any changes on your own. Good luck!
RN4ever , Netball-50 has correctly identified that they are augmenting on pramipexole, this is different to tolerance and the very worst advice I’m afraid is to increase the dose!
Netball-50 you will have to do what many of us on here have done, wean off pramipexole very slowly (the tablets are tiny but with practise you can crack them, or some people crush them and divide the powder) Something like a quarter of a tablet decrease a week or fortnight should be doable.
You should be able to find some information on here to print off and take to your GP. It’s recommended that you have some opioid medication to ease the process as things will get worse before they get better ie back to your pre medication state, if your GP won’t prescribe opioids you can get codeine containing meds over the counter.
It’s not easy but it’s what you need to do and don’t be persuaded to increase your dose of pramipexole or to be switched to any other dopamine agonist drug whether in tablet or patch form.
Keep us posted and ask for support and advice, we understand!
Correct- you are augmenting! Do NOT increase the dose or change to a DA of any kind.
There are links to useful articles at bottom or side of this page, which ,as advised by Lapsed runner, may be printed and shoown to Dr.
Good luck.
Hi, I'm in Australia I posted yesterday about my situation.
Yes GPs don't realize about Augmentation. I spoke to my GP about Compounding Pharmacist, whom I rang to organise a script to wean off Sifrol, pramipexole. I used to be an RN so I can be a bit more assertive to the GP. I got put on it for Tramadol withdrawal after using that for 16 plus years for Fibromyalgia. I'm stuck in a Codiene Sifrol cycle trying to get off it.
Last night I remembered Clonidine is used for drug withdrawal, lowering these drugs = withdrawal symptoms = more RLS ... arm leg yuk for hours at night and at times during the day. 7 months on max 6ish mg Codiene at night trying to reduce Sifrol even with 5 capsules=lowest dose Sifrol tab...only 2 weeks at 3 caps. Last night I took 1 Clonidine (left over from Tramadol withdrawal) my night was much much better.
These drugs are a nightmare much harder to get off than opiates. Opiates are prescribed to help one get off them. Tramadol especially... that's a joke after a year getting off that.
Stay strong, be mindful Clonidine is a blood pressure medication so at night be careful getting up if you choose to see if your GP will prescribe that, its also a little sedating. It works in the brain stem to reduce limb movements to some degree.
Sorry if this reply is a bit jumbled been a rough week. Not sure if reading my post from yeterday might help you disregarding what I have said about Naltrexone but the Sifrol Codiene cycle going on.
All the best, take care.
Addit: oops typo, meant to say 60ish mg Codiene during the night.
I concur with the others - having augmented on pramipexole in the past few years - you have to get off it. You need to find a neurologist or sleep medicine doctor familiar with this nasty disease.
I was given pramipexole and gabapentin in fairly large doses by my sleep med doc (I'd gone to him for sleep apnea and mentioned I had been treated for RLS in my previous town and given Ropinirole (brand name Requip) which didn't seem to be working much any more - with RLS symptoms starting earlier and earlier in the day.
Since my sleep doc had mild RLS himself he was somewhat familiar with the disease and switched me to Pramipexole (brand name Mirapex), starting me on 2-4 tablets daily, each 0.25 mg (so at one point, my max daily dose was 1.0 mg - way way too high by recent dosing standards). And when that started not to work as well, the doc added in 200-400 mg daily of gabapentin (brand name Neurontin) .
in 2015, after reading about how my doc-recommended doses of pramipexole were too high, even though within safe limits for folks with Parkinson's disease (which I don't have), I felt my meds were ruling my life and I wanted to decrease them. (I'm also on 2 blood pressure meds and a statin plus vit D supplement, Cinnamon supplement and omega 3 supplement plus low dose aspirin. So, at the advice of my doc, I purchased a Relaxis vibrating pad for $1,000 - a price well worth the result. Using that for 5 months (it IS hard to tolerate sometimes, but when my symptoms were really bad, it actually was comforting - just horribly irritating to use when my symptoms had subsided but still were around), I was able to drop to the 0.5 mg of pramipexole and 200 mg of gabapentin where I remained, relatively comfortably until augmenting last year.
Over our 12 years of association, I've found I had to do my own research and provide it to him/educate him on how "normal" iron levels for most folks are low levels that must be increased for RLS sufferers. Last year, 11 years into working with him, he finally agreed to re-test my iron levels and when again finding them in the 50's (normal for others, not for RLS suffers), agreed to recommend and supervise my taking iron supplements (aided in absorption by vit C). Within 3 months my iron levels were nicely above 100 and my RLS symptoms a bit lessened - but I was still augmenting on the Pramipexole and so felt things were still out of control, especially since I felt I'd developed addictive eating behavior (a not-uncommon side effect of being on that drug).
This past year in January, I provided him with info about Horizant (I'd read of it on Health Unlocked), which while he'd know of it, he'd never prescribed to any of his RLS patients, believing it was just a manufacturer's scam to overcharge for a new med that was similar to an existing cheap med.
After he agreed with me that I was augmenting on Pramipexole and suggested I taper its use, possibly by also giving me an opioid (which I resisted), I said I'd try tapering at his recommended pace (reducing by 0.125 mg of Pramipexole every week to 10 days) - and by as I got down to a final 0.125 mg or 1/2 tablet, I broke that in half or 0.0625 and stretched the taper another two weeks. After some really rough nights and reading about how opioids DO help in reducing augmentation of RLS, I decided to use some remaining opioids I had on had from surgery earlier this year. So, during my taper period, I took about 1/4 of an oxycodone pill (can't remember the strength of the original pill - not much though) about once or twice a week. I'd only 5 pills, and managed to just use 1.5 pill to help tapering over 6-7 weeks and thus minimizing my risk of addiction to that med.
During this whole time of tapering, I remained on gabapentin - and in fact increased the dose some nights up to 600 mg, ok per my doc. But about 10 days after finishing the pramipexole, I stopped the gabapentin and went onto a once/day dose of Horizant.
Horizant is NOT just another way to get more $ from the consumer who could just use the cheaper (much cheaper) plain gabapentin. Horizant is gabapentin enacarbil. They are similar, but work differently in the body. From what I understand, gabapentin is relatively fast acting and stays in the body for a shorter time. Horizant/gabapentin enacarbil takes longer to work (instructions say take at 5pm daily with food vs. being able to toss down a gabapentin any time needed). And Horizant also stays in the body longer, as it slowly converts IN the body to gabapentin.
While there ARE risks to Horizant, like most drugs (risk of suicidal behavior being one of the most significant risks), I felt that my life on pramipexole was going to drive me to that same behavior - it felt like that medication was running my life instead of me. Now on Horizant, my mood has greatly improved and I feel the opposite of suicidal.
Good luck.
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