Dipyridamole?: Hello, As anyone here... - Restless Legs Syn...

Restless Legs Syndrome

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Dipyridamole?

Mikatrap profile image
12 Replies

Hello,

As anyone here tried dipyridamole to treat RLS? This article looks promising: movementdisorders.onlinelib...

Best,

mikatrap

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Mikatrap
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12 Replies
SueJohnson profile image
SueJohnson

Yes - see the related posts at the upper right of this page.

It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. 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, but the headaches were too much to bear so I discontinued it.

DNoda profile image
DNoda

yes I tried it, but made no difference

RLSLearner profile image
RLSLearner

The headaches are said to go if you persist. Even to the point of taking it with pain meds for a few weeks. I think one of the top options in emerging medications. I have tried, a couple of times, reaching out to Dr. Garcia Borreguero asking if they are using Dipyridamole as a routine treatment after the study - but got no response. If anyone, especially in Spain, has experience with it or a way to contact Dr. Garcia Borreguero, that would be appreciated.

in reply toRLSLearner

Just be aware that NSAIDs (eg. Ibuprofen, aspirin and mefenamic acid, etc) should not be taken with dipyridamole as they may increase the risk of bleeding.

Bumble34 profile image
Bumble34

Yes I`ve read the Clinical Trial conducted in Spain a couple of years ago and although the results were promising whenever it comes up on this site as it does from time to time, there are very very few people taking it long term successfully.

WideBody profile image
WideBody

yes, 100 percent the best drug with the least side effects for RLS for me. Some things you should know.

Dipyridamole is an ENT1/ENT2 blocker. The goal is to increase intercellular adenosine. The deficit in Adenosine is caused by a long term iron deficiency,

If you have been chronically low in iron, Dipyridamole may help, but first get your iron levels up. I had an infusion and now supplement with iron and vitamin c daily.

When I first started taking Dipyridamole I thought it was a miracle. Not some of the PLMD does slip through but it is more manageable.

I used to take Dipyridamole every day, now I only take it as needed. Any car ride over an hour and I promise you I’m taking Dipyridamole.

Mikatrap profile image
Mikatrap in reply toWideBody

Thanks!

I’m now trying to tapper off dopamine agonists (Mirapexin extended release) as they have worsen by RLS symptoms by at least a factor 10 over a 4 years period through “augmentation”. I tried pregabalin and gabapentin before and their side effects were too hard for me ( memory loss, tiredness, low mood). Tradonal can help me in case of strong crises, but I don’t want to become an opioid addict So dipyridamole seems to me like my last chance to get RLS under control. Glad to hear that it worked so well for you!

I had an iron infusion a week ago, despise that my serum ferritin level was good (~130). Still, my tapering off pramipexole has turn to a nightmare, so much that I’ now hospitalised in a psychiatric unit to help me go through this weaning. The reason why it is so hard is that I tapered off Venlafaxine just before, and my nervous system is now completely out of balance The iron infusion did not help, apparently. I also tried supplements of folate, vitamin D, selenium and calcium, without success

Has someone here tried to introduce dipyridamole while tapering off a DA? If this molecule is effective against RLS, maybe could it ease tapering off these awful DA drugs?

Do headaches due to dipyridamole abate for some weeks, or do they persist for ever?

WideBody profile image
WideBody in reply toMikatrap

I am sorry you are going through this crap. It is hard, I feel for you. I am also sorry. I don't think Dipyridamole will help you. If theiron infusion helped, I would be more inclined to think Dipyridamole will help.

I know when I was augmenting I was willing to try anything. At that point I honestly don't think that Elephant tranquilizers would have worked.

Mikatrap profile image
Mikatrap in reply toWideBody

At least you made me smile with your elephant tranquillisers 😂

ILoveMyDogSunny profile image
ILoveMyDogSunny in reply toWideBody

Hi Widebody, I see here and in other posts that you mention dipyridamole is more likely to work if iron supplementation helps. I've found no difference in my symptoms with getting my ferritin over 100 (have even gotten it over 200 with no noticeable difference in symptoms). Do you think I should let go of the idea of trying dipyridamole?

WideBody profile image
WideBody in reply toILoveMyDogSunny

The hypothesis behind Dipyridamole is low brain iron creates a deficit of adenosine in the brain. I'm not a doctor, but I would say Dipyridamole probably won't work for you. I hope you find your relief soon.

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