Dipyridamole update ** Dr. Sergi Ferré responded

[WideBody]

I have been using Dipyridamole alone for my RLS for about 4 months. Initially the response was amazing, I was able to lay still for the first time in years. I quickly stopped the pregabalin I had been taking for years. This was working, I quickly went up to 300mg Dipyridamole. I started getting headaches, so backed off to 225mg. After a couple of weeks, I went back to 300mg, no headaches.

My issue is that over time it seems less and less effective. I still manage to get to sleep, but it is taking longer and longer. So, I decided to ask the author of the studies and a very prolific scientist for RLS studies, Dr. Sergi Ferré directly.

To my surprise, Dr. Ferré . I am going to put a copy here, minus personal information.

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Thank you for your message, which is very important, since it is providing new information about the treatment with dipyridamole. Unfortunately, we do not know more about its pharmacology and efficacy applied to RLS, other than what we have recently published, both at the preclinical and clinical level. You have to understand that this is the first drug of its kind that it is being studied in RLS. Nevertheless, I am ccing this message to Dr. Diego Garcia-Borreguero, who is responsible for the clinical research. He might be able to help you and give you some advice about the dosage or time of administration. I could also tell you that we are intensively working on possible new pharmacological strategies related with the same target that dipyridamole. Again, I thank you very much since you are giving us clues about new preclinical experiments, to study the loss of efficacy of chronic treatment with dipyridamole.

Sincerely,

Sergi Ferré, MD, PhD

Integrative Neurobiology Section

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I thought you all might be interested.

[TeddiJ]

Thank you, WB!

[BAK524]

Wide Body are your RLS symptoms returning? I still use dipyridomole, although sparingly. Mostly I use it if I'm awakened by my leg jerking and can't get back to sleep. It seems to help settle me.

[WideBody in reply to BAK524]

I am moving in that direction. Two nights ago I took 300mg and had a rough night. Last night was 225mg and great. So, I am taking it more "how I feel", I will probably talk to the doctor about that.

[Joolsg]

Thanks so much for posting this WB and for 'trialling' dipyridamole.When you say it's becoming less effective, do you mean the RLS is returning and keeping you awake?

I'm sorry if that's happening. Hopefully Dr. GB will reply.

[WideBody in reply to Joolsg]

When I first started, Dipyridamole was almost 100% effective. It is still working, but I am taking longer going to sleep. I seem to have a low level RLS that goes away in a few minutes of deep slow breathing. Annoying for sure, but way better than before.

[Jumpey]

Tha is for trialling this.I hope you get help from GB.

[LotteM]

Thanks for doing that and posting it, Widebody. Good news that Ferré replied and took heed of your experience. Also good to know that he seems to be working on hopefully a more targeted medicines to address the adenosine issue than dipyridamole. As dipyridamole addresses the adenosine receptors only indirectly.

Also good to hear that the headaches settled, but so sorry to hear that the dipyridamole seems to lose effectiveness. I assume that is what you meant, that RLS started to return.

It is sp bl**dy difficult to be patient. But tue development of new medicines takes an awful lot of time, and for RLS it is still unknown WHY we have brain iron deficiency and ensuing poor dopamine and adenosine receptors.

Are you going to add e.g pregabalin again?

[WideBody in reply to LotteM]

I really do not want to add pregabalin again. I have been down that road. I think pregabalin side effects are not worth the benefits. I do think pregabalin helped at first, but RLS always seems to find a way.

[LotteM in reply to WideBody]

Understandable, WideBody! Are the symptoms still bearable?

[Guitarpickin]

Dear WideBody, as always, thanks for sharing your information and experience. So sorry to hear the effectiveness is waning. It was exciting and encouraging when it was working so well for you. Its great Dr Ferre was receptive and interested. Fingers crossed they come up with something better and longer lasting. And I hope your “still” nights return somehow.

[Memmy]

Very interesting thanks. I tried it and it gave me really bad headaches unfortunately.

[WideBody in reply to Memmy]

Did you increase the medication slowly? A couple nights at 50mg, then a couple at 100mg etc... I quickly went to 300mg and backed off to 225mg. I am staying at 225mg and sometimes have a 300mg night as needed.

[Amrob]

Thanks for keeping us informed WideBody.

It's great to see that Dr Ferre has taken your experience on board as the "shelf life" of a medication is an important consideration in deciding whether to take it.

And i'm sorry to hear that the dipyridamole is no longer as effective for you.

I'm wondering if you were to come off it for a period and then go back on it, whether it might become effective again.

[WideBody in reply to Amrob]

It's still helpful, just not as effective. Of course I am worried it may stop working altogether.