Restless Legs Syndrome (RLS) Discussion Board

I recently read the research article on this website that found that a the lack of adenosine as a contributor to RLS. They mentioned that a drug already exists that increases adenosine although it is not very powerful at it. I was wondering if anyone has tried this drug and what were the results?

Two or our members have been experimenting with this new medication and have found it helpful, but not a cure-all.

Take a look at this comments in this discussion: http://bb.rls.org/viewtopic.php?f=4&t=10114

I read the entire thread. Thanks. That was very helpful. I think I will try this. I am to the point that the medications I use have little usefulness. I use a power plate a lot -- several times each night and also multiple times a day -- although I don't have to use it as much during the day, for somewhere between 30 min to an hour and a half. This massages my tight muscles and allows me to sleep somewhere between one and three hours until I have to repeat the process all over again. I am currently taking codeine without tylenol and an occasional diazapam. The codeine only works for about 4 or 5 days and I have to take a holiday to get it to work again -- and when it works it is only partially effective. But it seems like I am having to use the power plate longer each time I use it and the last time I took the codeine I had a reaction during the day where I experienced severe RLS symptoms while driving. I also take a mirapex about every month or two at a dose of .5 mg. I see from the thread you recommended that both individuals took very small doses of mirapex with the dipyridamole, so I will get a prescription of .125 mirapex and break it into fourths.

Hi srgraves01,

I am one of the two dipyridamole experimenters. Although it does not eliminate symptoms, I am very glad I take dipyridamole. It helps to make the rls more bearable and definitely improves daytime well being. In the study, many of the subjects achieved complete relief using dipyridamole but they were all previously untreated for their rls. I currently take 125mg dipyridamole daily. I have experimented with various doses by gradually increasing as high as 300mg and then reducing again. As far as I could discern, the higher doses did not produce a commensurate improvement in symptoms over the lower doses so I stuck at 125mg. I am currently messing around with other medications but when that is complete I may try increasing dipyridamole again to check that there is nothing to be achieved by increasing the dose.

Dr. Ferre, who was involved in the original study and wrote the paper identifying the potential role of dipyridamole, recently gave an excellent talk for the RLS foundation about dipyridamole. This is available to members as a webinar on their website.

I hope the dipyridamole is helpful for you. I would be very interested to hear how you get on.

Rachel

I'm the other one of the two known dipyridamole users that post here. My experience is similar to Rachel's. I have severe RLS. The RLS that was treated in the paper was mild-moderate. I too have found that it didn't seem to help much for urge to move symptoms and helped a little bit for sleeping. What makes a big difference is my feeling of well-being during the day. I currently take 150mg, 75 mg at 7:30 p.m. and 75 mg about 11 - 12:00 midnight. I also take low doses of pramipexole, Kratom, THC, and Gabapentin.

Oh yes, I should have listed my other drugs. My regime is complicated - usually I take pramipexole (0.044mg) and pregabalin (lyrics) - gradually reducing and now down to an almost negligible 30mg. I have just finished a 3 week break from mirapexin during which I used Kratom to control my symptoms. When taking mirapexin I also take 4mg of ldn but that completely undermines the effect of the Kratom so I discontinued it about 2 weeks ago. I plan to reintroduce ldn soon however.

As I said, for me the biggest impact of dipyridamole was daytime well being and lucidity but a huge side benefit was that it eliminated the creepy crawley feeling even when the legs are bad. Sadly it seems to have very little impact on the urge to move.

Tried to talk my Dr into letting me try dipyridamole. He wouldn't even consider it. Just said that was too small of a test to make any conclusions.

curqlink wrote:Tried to talk my Dr into letting me try dipyridamole. He wouldn't even consider it. Just said that was too small of a test to make any conclusions.

I think that is what most prudent doctors would say given the limitations of the study.

I think the best argument that most people with RLS can make is that the downside risk is low. The medication is quite safe and the likelihood of a problem at recommended doses is quite low.

Thanks for all of your encouragement and advice. I was able to get some and took my first dose of 100 mg yesterday. I will let you know how it goes.

.I am sorry to report that dipyridamole had little if any positive effects for me. I started taking 100mg. I experienced the side effects of feeling bad like I was getting sick. This subsided after a.few days and I increased.the dose to 125mg. I again experienced these side effects; but this time they did not subside. I tried taking a second dose later of 50 mg. When I raised the second dose to 75 mg I had a horrible night, constant agitation no matter what I tried, nothing helped. I am assuming that this dose was too high for me. I also experienced the side effects of a stomach ache and diarrhea. I then reduced the dose to 75 at first and another 75 about 4 hours later. This eliminated the side effects of feeling like I was getting sick. But I still had the side effects of a stomach ache and diarrhea. However I could not identify any clear positive effects. In fact there were several evenings where I felt like I did not want to take the medicine; but I forced myself to take it anyway. However one valuable thing I learned from Holland and Rachael is the positive effects of taking a very small dose of mirapex. When I originally took mirapex I was taking 2 mg from 2000 to 2010 when I first augmented. A few years later I took .5 mg mirapex with hydromorphene because the hydromorphene made me agitated by itself. But in 2017 I augmented a second time and the hydromorphene also was giving me hives. So I am now taking codene with no Tylenol; but it has a very limited effect. However taking a small dose of mirapex with it helps it be more.effective . I can only take this occasionally;. but I definitely find this of value.

Steve

Steve, when you are trying the dipyridamole, were you also taking your regular medications, no other medications, partial doses of your medications?

stjohnh wrote:Steve, when you are trying the dipyridamole, were you also taking your regular medications, no other medications, partial doses of your medications?

Part of the time I was taking medications and part of the time I was taking a holiday of a couple of days.

Steve

curqlink wrote:Tried to talk my Dr into letting me try dipyridamole. He wouldn't even consider it. Just said that was too small of a test to make any conclusions.

Same with my doc.

Steve, The paper describing the use of dipyridamole used test subjects that had mild RLS. My experience and the experience of Rachel (legsbestill) is that for people with moderate and severe RLS that dipyridamole doesn’t replace the regular medicines that you used to control your symptoms. What it does do is improve the feeling of well-being the next day. While this doesn’t seem like much, it actually is a very significant effect.

stjohnh wrote:Steve, The paper describing the use of dipyridamole used test subjects that had mild RLS. My experience and the experience of Rachel (legsbestill) is that for people with moderate and severe RLS that dipyridamole doesn’t replace the regular medicines that you used to control your symptoms. What it does do is improve the feeling of well-being the next day. While this doesn’t seem like much, it actually is a very significant effect.

Perhaps it was because I experienced more side effects than you or Rachael did. Also, I am at a point where I am unabt to take medications daily for very long because their effectiveness wears off so fast. But I am glad that both of you were able to benefit from talking it.

Steve