How were your experiences coming off ... - Restless Legs Syn...

Restless Legs Syndrome

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How were your experiences coming off DAs?

Wonko_TheSane
Wonko_TheSane

Hi all, I've had RLS since about 10 years. I've taken Pramipexole for it nightly for about 6 years of those. I was up to 0.54mg per night, having to increase my dosage regularly to keep its effect on my sleep. When this didn't help anymore, being the maximum recommended for RLS, at least by some sources, I decided I need to try and at least take a break. I had tried Pregabalin before, but it only allowed me to reduce the Pramipexole by about 30 percent. On top of the RLS I recently developed a tremor in my left hand and am which is annoying sometimes, and disabling (typing at work) when it's bad. I have no idea if this is idiopathic, a side effect of taking rather high doses of a dopamine agonist for years, or even beginning Parkinson. My doc suggested cutting the DAs out cold and substituting with oxycodone, since that's required for properly testing for Parkinson.

Instead of that, I followed the advice given by knowledgeable people here: I started weaning myself off of the Pramipexole slowly and ordered Kratom, which luckily isn't regulated where I live (yet?). The Kratom had been great so far, having allowed me to cut my ppx dose in half over a week. I've noticed several things though, and therefore would like to know what others have experienced getting rid of their dopamine agonists.

1) my tremor has become worse - could that be a side effect of DA withdrawal?

2) My back muscles, which were always tense in sync with my RLS when it got worse, got so tense that I was in enough pain to worry about a herniated disc. I took some diclofenac (called Voltaren here) and it helped.

3) I wonder about a longer term solution. I'm considering Kratom only, or maybe rotating Kratom / Pramipexole to keep tolerance under control. I'll have to try and convince my doc, and I worry about Kratom being outlawed. What have you tried?

I'm starting a new job next week and would like to be prepared - what else have you experienced that I could be (at least mentally) prepared for?

Thanks in advance for your input,

Wonko

5 Replies

HI, First, pramipexole can NOT be "rotated". That is not how it works. You either take it every day, as it has to build up, will not work the right way, unless taken properly. You should always be on the lowest dose possible, and weaning down is not easy. IF your symptoms were getting worse, and you say you were upping the dose, you were or are probably augmenting. There are a ton of posts on this subject, probably half of them have to do with dopamine meds and side effects and augmentation. I will not comment on kratom, it is illegal where I live and will be illegal in more states ( in the US) shortly. I have done my research, and it is nothing I would ever use, legal or not. Just because something is "natural" does not always mean "safe". But, I wanted to answer you, to let you know that you cannot take pramipexole "as needed". IT just will not work correctly.

Thanks for your reply! By rotating I didn't mean a rotation on an "as needed" or daily basis, but on a longer term scale, e.g,: 1) Taking pramipexole for several months at the smallest dose it initially works. Then, when that dose loses its effect, I would 2) wean off and transition to another substance. Should that substance either cause a tolerance (losing efficacy) or cause augmentation, I would wean off of that substance, to go then back to (at least months of taking) DAs, thus restarting the cycle at 1 above.

What makes you say that DAs must absolutely be taken regularly and cannot be taken as needed? Do you have scientific sources or own practical experience? Pramipexole has a half life of under 12 hours, so it will only build up a small amount in the body: about 70 percent will be eliminated once you take the next daily dose on the following night. I have been told by 3 independent neurologists to do just what you say must not be done, to take it as symptoms dictate - taking more in particularly bad phases, but always taking at least my established dosage.

I agree that kratom should not be taken lightly btw, I have done my research into its pharmacological properties as well. I didn't take that decision lightly and wouldn't (and haven't) recommed it to anyone, just as I wouldn't recommend other opiates or opiate agonists! I fully agree that "natural" is NOT "harmless". It doesn't matter if a substance was produced by a plant or a machine, what's relevant is its effect on the body- my body or your body! - and everyone must take that decision themselves, or decide to delegate that decision to someone whom they trust more on it than themselves!

Thanks again for your input!

I've taken pramipexole for about 20 years. I also have a tremor, but my dx is MS (got that 25 years ago). I've had to increase the RLS med recently and added gabapentin which doesn't really help, but I've been in a relapse for several years. I also take kratom for pain. I've done plenty of research on it, too. I am a researcher by profession. Kratom along with CBD oil, helped me stop taking opioids, which are far more damaging than kratom. We've worked very hard to keep it off the DSM schedule here in the US and word is it will not be made illegal. Far from it.

If someone is stupid enough to take too much kratom, they'd get very constipated (it's pure fiber), and probably throw up. You're supposed to limit your dose to twice daily. You also have to experiment to find out how much you need to get relief. I take 4 size 00 capsules per dose (I can't wash the loose powder down). It irks me when people voice an opinion on something they have no experience or education on. I encourage you to research for yourself. If you want to try it for pain get the red vein species. I like red dragon the best. It has never made me high or affected me adversely.

Good luck to you.

I was on .5x4/day Pramipexole fr about 10 years, and .25x4/day for the years before that - 40 yrs total with RLS. I had vein work done last fall and cut my dose in 1/2 over 2 weeks; then I started using CBD/THC so got the first solid sleep I”d had in decades. Now I take 1/2 of a 1:1 gummy in the late afternoon, and the other 1/2 at night before bed. I’m down to 1/2 of a .5 tablet once or twice a day. Very few symptoms. I had to play around with the CBD/THC does/type/frequency, and may still have to, but for a week or so that’s my routine. It’s amazing. For me the most helpful thing has been getting solid sleep almost every night. It’s like a miracle. If your regime stops working [don’t mess with a good thing. :) ], and if you live in a state where its legal, I recommend talking to your dr. about CBD/THC. Plain CBD doesn’t do it for RLS. Good luck!

Hello , I bought some Krantom but then I got scared about taking it so I took it to my doc to see what he thought and his words were I wouldn’t give that to anyone , as it’s the same old tale you get used to the does you are on and then you have to take more and realy you have bought this on your own not talked to your doc first I did get my money back , good luck

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