Has anyone given this a try? It is apparently available without a prescription buyldn.com/
Here is a VERY complex paper explaining some of the mechanisms. "Importantly, not only there was a significant effect of subjective symptoms, but also of PLMS and sleep complaints. These are, of course, preliminary results which could be influenced by a placebo effect and, therefore, await confirmation by a more extensive double-blind clinical trial. Confirmation of the therapeutic effect of dipyridamole in RLS would bring ENT1 inhibition as a new therapeutic approach for RLS, offering an alternative to dopaminergic drugs and, therefore, to their long-term complications, mainly augmentation."
Involuntarydancer takes dipyridamole. And a while ago (half a year) I tried to summarise the gist of that difficult paper in more accessible words. Have look in my and ID’s histories, also for the earlier discussions on the topic.
Yes; I am taking it in the strength of this paper. Don’t get too carried away however. None of the subjects of the study had been treated for rls previously which suggests their symptoms were not hugely severe and also that they had not been through augmentation which may have had an impact on how well they responded to the drug.
My response to dipyridamole was much more muted. It calms the creepy crawley sensation a lot (which is very welcome) but not the urge to move. Until I started dipyridamole I hadn’t realised they were two separate sensations. The real benefit is that i feel a lot better during the day for some reason - more like myself and less exhausted - after starting dipyridamole. One other person started it at the same time as me - on a different forum - and he recorded the same experience. However both he and I had to continue with additional treatment options to control the urge to move. I am currently titrating down with a view to discontinuing dipyridamole to see if it is a necessary part of my current regime.
It’s fair to say that I have had years of pharmaceutical treatment for my rls and was on a high dose of d/a for a long time and this may be reflected in my response to the drug.
As a blood thinner it has a useful side effect if you have a heart condition but probably you should check with your GP before starting it and don’t take aspirin based products when on it. I ran it past a cardiologist recently and he thought it was a pretty safe drug to be taking generally. Warning: it does cause headaches for a few days as you titrate up.
It made little difference that I could tell, (though perhaps I concur with Dancer), but I was also taking pramipexole at the time. Subsequent experience has convinced me that pramipexole interferes badly with many other drugs, so my experience may not be helpful.
I see no reason at all not to take it - a GP gave it to me to try, without demur, as it was a drug that he knew very well for its original purpose, which is as a gentle anti-thrombotic. It has been on the market for a long time, so its effects are well-known. It is taken is a dose lower than for its original purpose.
I took it at the dose that was used in the study you cite.
There is no reason not to try it unless you take Warfarin or are a bad bleeder.
You have to take it at higher dose for it to cross the brain blood barrier. I'm starting it next week at 100-200 mgs extended release. Maybe it didn't work well for you because the dose was too low?
No, I took 200mg, but it made little or no difference - to me.
However, I took it while I was still taking Pramipexole, and I now have good reason to think that dopamine agonists interfere quite profoundly with other drugs.
Ahh OK.. Well I'll be clean from all other meds when I start. I'm detoxing from the opiates and Gabapentin I've been on. Will be very interesting to see the outcome. My RLS is severe but mainly sensation as opposed to limb movement, which I've heard it's pretty good for. Even if it muffles it a bit I'll be happy. I'll go up to 400 mgs if necessary to give it a good chance and trial.
I'm trying to keep my expectations low.. I'll know within 48 hrs if it's worked at all. Yes I intend on doing putting up a post to tell you all how I get on.
I too titrated up to beyond 200mg for a while but did not find a higher dose any more helpful. I was not taking pramipexole initially with the dipyridamole though I did start it (restart it) a couple of months after starting dipyridamole. I didn’t notice a difference in the effectiveness of dipyridamole between when I was on prami and when I wasn’t (though the pramipexole did/does help my rls - sadly it is the only drug that works reliably for me).
Your link is for Low Dose Naltrexone, not dipyridamole.
LDN is not available in the UK without a Doctor’s prescription. Fascinating that the FDA allow it for sale in USA so readily.
Flowergirl used LDN to withdraw from OxyContin and pregabalin using a small dose until off both. She then upped dose of LDN and found it completely controlled her RLS.
She has now left this forum (I tried to ask her if it was still working).
Involuntary Dancer has also tried LDN so take a look at her posts.
It can’t be taken with opioids as it is an opioid antagonist ( that’s why it helps during withdrawal) and in the UK it’s only available with a private prescription, although I’m sure there will be sympathetic GPs around.
I also took LDN for several months. Up to 1.5 mg, as I didn’t tolerate higher doses well. Initially I thought -like ID - it made me feel better during the day, although it had no noticeable effect on my RLS. I stopped it some two months ago without any ill effects on my daytime feelings or nighttime symptoms. Symptoms currently under control with 10mg slow release oxycodon and 100mg gabapentin.
I titrated up slowly - think I started at about 75mg and went up to over 200mg. I got a headache with each dose increase and at some stage over 200mg the headache did not resolve as it did with lower doses. I then started titrating down and settled at about 125mg which I remained on for a good few months - maybe about a year. I am not taking it at the moment.
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