I've been following with increasing interest the comments of those of you who have tried dipyridamole for RLS. The claims about a new pathway involving adenosine are compelling, and the trial results from dipyrimadole therapy look promising. Both, however, are still in their early stages. So we're still largely in anecdotal territory. For now. Importantly, dipyrimadole is an old drug with many years of experience. It appears well tolerated, but with pretty well-known side effects, and some cautions for certain classes of users. Therefore, I'm interested enough to consider it, proceeding with caution, and minding the warnings about other drugs (like aspirin).
So I'd like to ask any of you who have used or are using dipyrimadole to weigh in, please:
- how has it worked for you? Any improvements in symptoms or sleep?
- how long used, and are you still using?
- any notable side effects?
- how much/when are you taking it? What other meds, and dosages?
- has it allowed you to reduce any other meds?
Thank you so much!
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rls_optimist
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Hi, as you might have seen, I was also an RLS optimist re dipyridamole. However when I looked into it for me at the moment it isn't possible. I am being investigated for possible mysasthenia gravis due to some symptoms I had earlier in the year - now gone but apparently it can come and go. Timescale and still not sorted due to our waiting lists which crop up in every condition and especially neurology.
I am really keen to try but don't dare and I doubt anyone would prescribe for me at this point as it can make myasthenia worse which is a scary and dangerous prospect. I might never know as it can be hard to diagnose for certain.
So, I'm disappointed and if it turns out to be the unexpected answer for many I will be even more disappointed - absolutely sods law if it is effective and i can't take it.
Not sending this for sympathy. Just letting you know as I was so enthusiastic to try it and you might wonder why I haven't posted an update.
I just posted you a reply about dipyridamole in another thread. Really sorry to hear it’s probably not an option for you, Alison. I hope you find something else to help.
I’ve been taking it since January for my moderate to severe rls. I titrated up to 300mg. Every time I increased (by 25mg a time) I got a headache which resolved after a day or so but at 300mg the headache didn’t resolve so I started to titrate down again to see how low I could go and still get the same relief.
I now take 100 or 125mg at about 8pm. It doesn’t get rid of all symptoms for me (in the study the subjects had not had previous drug treatments for their rls whereas I have already tried all the mainstream treatments so I didn’t expect the same level of relief). There are huge benefits however: rls is more muffled generally, definitely not as severe as pre-dipyridamole; I don’t get the horrible creepy crawley sensation at all any more - only the urge to move; I feel MUCH better during the day - much less dopey and miserable and much more like myself. I don’t have any side effects from dipyridamole. In fact, I feel healthier since I started it.
I do need additional drugs to get a proper night’s sleep. I have been gradually reducing pregabalin with a view to eliminating it (currently at 60mg daily). It may help a little with my symptoms but I don’t think it has a huge benefit.
I take ldn (4mg daily) since April. Unfortunately I don’t think this helps hugely with rls but I think it also makes me feel better during the day.
I reintroduced a tiny dose of mirapexin (0.044mg) about a month after starting dipyridamole and this combination is fantastic for my rls. I am very anxious about augmentation with mirapexin so only take it 5 out of every 7 days and am currently taking a longer break from it. Without mirapexin the rls is bad enough to disrupt/prevent sleep but isn’t nearly as bad as pre-dipyridamole.
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