Anyone taking dipyridamole?

[Doctorplacebo]

There is a group in Spain doing good research on using dipyridamole for RLS. I am impressed by their results and would love to try it, but it is way off-label to use it for RLS and would be a hard sell for my (new) doctor. If anyone wants to see the articles, just enter the following into your search engine and many encouraging articles will pop up: "scholarly articles on dipyridamole for RLS." The beauty of it is that it has no mind-dulling effects at all and it works right away once you have titrated up to your effective dose (average about 200mg). There were a couple people on rls.org who were fortunate enough to get on it and reported great results a year ago.

So I am wondering if anyone on this forum has managed to get a prescription for dipyridamole and, if so, how are you doing?

[SueJohnson]

In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...

[Hidden]

Yes, i trialled it recently. I posted about my experience here

healthunlocked.com/rlsuk/po...

In brief, I was unable to persist with dipyridamole because of the debilitating headaches it caused, even at a relatively low dose.

Headaches seem to be a common side effect with one paper suggesting that up to 60 per cent of people experience headaches as a side effect of dipyridamole treatment.

Several others on here have tried dipyridamole of late.

[BAK524]

Hi, I have been using dipyridomole for several month now. I am currently using it every night, 200mg. I am transitioning from ropinerole to gabapentin and dipyridomole. It does seem to help me control PLMs as I drift off to sleep. It does cause headache, but this has lessened significantly with continued use. It also tends to cause a skin flush. It's temporary but kind of uncomfortable. I consider these a small price to pay for the benefits. I've also noticed it seems to improve the quality of my sleep. There are others on this forum who have experience with it.

[Qalba]

I was on it but it did not help my RLS symptoms at all.

[WideBody]

At first Dipridamole took away 100 percent of my RLS symptoms. However, it is only about 90 percent effective. There were some headaches at the start. I don't notice them anymore at all.

I have to take Dipridamole on an empty stomach or the results may not be as good.

I still take 225mg a night. Since starting Dipridamole, I am completely off pregabalin.

Dipridamole is the only drug I take for RLS. It is VERY effective. The side effects are way less than any other drug. I have tried them all.

I also take Ferrous Bisglysinate and Vitamin C at night before bed.

[TeddiJ]

Doctors overall seem fine prescribing it for a test run; one doctor had me try 100 mgs, which did not help. Then he said to go up to 200 mgs-which I still need to try. Some say 300 mgs is what works.

Dr. B told me it would not help me and would not prescribe it. I think those of us damaged by long term DA use may not be as lucky with this one. I still plan to fully try it, just in case it could work.

[WideBody in reply to TeddiJ]

TeddiJ, I have been prescribed 300mg a night (4*,75mg). I take 225mg usually. That seems to work. Sometimes I take all 4, but rarely. I am a big guy, 105kg.

In the study 225mg was the average effective dose.

[TeddiJ in reply to WideBody]

Thank you, WideBody-that is so helpful!

[Doctorplacebo]

Thanks everyone for your responses. My next doctor appointment is Nov. 21 and I will ask if I can get a prescription for dipyridamole. Sounds like it may work well for PLMs when falling asleep, which is my main problem. If the headaches aren't too bad I can put up with it in order to get some sleep.

[Hidden in reply to Doctorplacebo]

Good luck and please report back.

[Merny5]

yes, please let us know as I am very interested. I have been on methadone for several months. Although it is working most evenings, I would like to not have to take a narcotic.