Dipyridomole - my experience

[BAK524]

So my neurologist agreed to let me give dipyridomole a try. I started on 50 mg twice a day for a week, and worked my way up to 150mg twice a day. I'm finding that generally speaking it works at this dose. It takes about an hour to kick in. I have daytime symptoms, so that is how I am able to observe its effectiveness. For me at this dose it lasts maybe 5 hours. It takes away the creepy crawly low level twitchiness. It does not feel like a silver bullet or miracle cure however. I tried taking 200mg but it made me nauseous. I think it may help to take it on an empty stomach. The one major downside is that it has been producing a headache that can last for hours as well, some days worse than others. If you're looking for another medication to help in the battle, this is worth a try.

[WideBody]

The headache does seem to lessen over time. It definitely helps to take on an empty stomach.

I would like to ask you. Did you respond to iron and did you have low ferritin?

[BAK524 in reply to WideBody]

In July2021 my ferritin was at 49. I started on an iron supplement, taking it every other day. I did not notice any improvement in my symptoms, however I may not have been taking it before bed on an empty stomach. I got my GP to give me an iron infusion (iron sucrose), and finished the last dose on Jan 21st. On March 24th I had lab work done again. My ferritin went up to 238. Still no obvious improvement in symptoms, but there is a confounding factor. In November I started on 150 mg pregabalin and ,25mg ropinerole (working my way up to 1 mg, before bed) The pregabalin worked wonders for the RLS, but the side effects were absolutely intolerable. I have now tapered down to 50mg, and am having a very difficult time with withdrawal symptoms from this medication, which I believe possibly include an increase in RLS symptoms. In other words, I think that I am experiencing a rebound effect, and my symptoms have not returned to a true baseline level. I thought that I read on an earlier post of yours (maybe reddit?) where you believed that dipyridomole worked for those who responded to iron? Is there any evidence to support this? I hope that I do respond to iron, as I'm considering an opioid now as a last resort. (I know that augmentation on the ropinerole is a when, not an if). I see Dr. Buchfuhrer on 4/6, and get his take. Does the dipyridomole continue to work for you? I know that you also weaned off the pregabalin. Some of us have a very difficult time with this medication...

[WideBody in reply to BAK524]

Yes, I am 100 percent off pregabalin, hopefully for good. It helped in the beginning, but lost it’s effectiveness. Pregabalin felt like a mask to cover up the real symptoms.

I must say there were some withdrawals. While not as bad as Dopamine Agonist drugs, I wouldn’t want to do it again.

Dipyridamole is still working. I do need to take it on an empty stomach. I also think it gives me a slight headache.

[BAK524 in reply to WideBody]

WideBody do you have a theory that dipyridamole is more effective for individuals that have responded well to iron therapy?

[WideBody in reply to BAK524]

From what I understand, the lack of adenosine (and build up of glutamate) is caused by iron deficiency. It is responsible for the hyperarousal and PLMD part of RLS. It is best explained in this article

frontiersin.org/articles/10...

That article explains a lot about what I experience with RLS.

So yes, I do think there is a correlation.

[Hidden]

Thanks for sharing your experience. Are you on any other medication for RLS?

I got a script for dipyridamole at a recent appointment with my sleep specialist. Now I just need to wait a few weeks for the raw ingredient to be shipped from the US so I can start my own experiment.

[BAK524 in reply to Hidden]

Good luck. Hopefully it will provide some relief. Let us know how it goes for you...

[WideBody in reply to Hidden]

I would love to hear how it goes for you, fingers crossed.