Anyone taking dipyridamole? - Restless Legs Syn...

Restless Legs Syndrome

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Anyone taking dipyridamole?

Doctorplacebo profile image
11 Replies

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?

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Doctorplacebo profile image
Doctorplacebo
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11 Replies
SueJohnson profile image
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...

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 profile image
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 profile image
Qalba

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

WideBody profile image
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 profile image
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 profile image
WideBody in reply toTeddiJ

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 profile image
TeddiJ in reply toWideBody

Thank you, WideBody-that is so helpful!

Doctorplacebo profile image
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.

in reply toDoctorplacebo

Good luck and please report back.

Merny5 profile image
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.

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