Following up on earlier posts by involuntarydancer, I happened to just notice that the manuscript reporting the results of the first study using dipyridamole for RLS has appeared ‘in print’, i.e. online. Good to finally see the results described in more detail.
The study was open trial, meaning that people knew what they were taking. The patients had idiopathic RLS, thus RLS that is not the result of another health issue. And they did not take prior medication for RLS. Thus no information on how severe in terms of persistent their RLS is.
Still, the results look promising. And I think ID will second that. See her posts and updates. Personally, I am especially pleased to read the positive effects not just on the RLS, but also on sleep and hyperarousal, as both are still a big issue for me. And, as I wrote before in one of the other posts about dipyridamole, I like very much the fact that this line of research resulting in this trial medication is built on knowledge specific to RLS and good neurologic general logic and reasoning. In contrast to almost all previous research on medication for RLS, that originated from coincidental observations.
I shall download and read the full manuscript later today to see what other relevant info it holds for us. I am very much interested about their suggested next steps.
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LotteM
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Thanks LotteM. I really wanted to see this study. As I recall, ID indicated that there were 3 consecutive studies, or 3 phases to the study? I hope we can reference all 3.
I went to the RLS Clinic earlier this week and had a great review of a lot of issues, including switching to dipyridamole from Horizant, to get rid of the gait/balance problem. They also did a blood/iron test with the possibility of doing an iron infusion. Am really encouraged by the open approach they take. I am waiting for the test results and their Rx, hopefully for diypridamole and the iron infusion, SOON. I will let you know how it works out.
Thanks for posting this, Lotte. I am ashamed to say that after a brief flick through the original paper I never (in spite of best intentions) attempted to read through it, still less understand it.
I have tended to assume that the symptoms of the participants in the study were not too severe as they were untreated prior to the study. I was therefore sceptical when I started on dipyridamole myself about its capacity to control my rls. As you know I was pleasantly surprised. It does not give total control but it renders symptoms a great deal more bearable and completely eliminates the creepy crawly feeling, although not so much the urge to move.
As you identify however a great benefit is that I am sleeping really well and feel a good deal more normal these days (almost completely normal). In spite of a horror of dopamine agonists after an unpleasant withdrawal two years ago, I have resorted to using 0.044mg pramipexole along with 225mg dipyridamole and this gives super coverage. I only take the pramipexole 5 nights out of 7 to try to limit the chance of augmentation. This week I reduced pramipexole to 0.022mg and it worked for four days but sadly last night the legs got jumpy so will revert to 0.044mg. I will try reducing from time to time - when I am feeling strong.
I didn’t experience any of the side effects noted but did get a headache for a day or so every time I increased the dose after 150mg.
I don’t recall what it was I said about 3 phases - i am capable of forgetting quite significant stuff but nothing is jogging in my memory. I believe that a follow up study is under consideration however.
I have been wondering should I get in touch with the team to let them know I am using dipyridamole for my legs.
I have a restless impulse to constantly test my medication regime to make sure I am on the lowest possible dose. In light of a more recent post by LotteM about dipyridamole which highlighted an issue I was already aware of but was turning a blind eye to, I have reduced my dipyridamole dose to about 100/125mg per night (there is a small risk of dipyridamole causing internal bleeding as it is a blood thinner).
The current system works pretty well but I am not entirely sure how much of it is down to the 0.044 of pramipexole and the 75mg of pregabalin (lyrica) I take - it may be that it would be working even without dipyridamole. It is hard to tell. I would reduce dipyridamole further and eliminate it to test this but I am experimenting with increasing my dose of ldn at the moment and I try to change only one drug at a time. I have been taking a break of 2 days out of every 7 with the pramipexole to reduce the risk of augmentation but I use kratom to manage my symptoms on the non-pramipexole days and I have a feeling kratom will not work with the increased dose of ldn so I am going to take pramipexole for the next two or three months without a break while I increase ldn and observe whether it works or not.
It goes without saying that I would like to be on a regime that gave the greatest possible relief with the smallest risk and fewest side effects.
If you put 'dipyridamole' into the search bar - or search under my user name - you will find more posts by me about my experiences with it.
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