Dipyridamole

[Keith1231]

I asked my GP if I could try Dipyridamole and showed her the study that Sue sent to me. She said she would need to ask Gastro, Stroke (I have a history of stroke and colitis) and Neurologist for their approval. The first two specialist said its okay but the neurologist said not to prescribe it as it has not been proven to help with RLS. I give up.

[SueJohnson]

Did you show the neurologist the study?

Also even if s/he feels it won't help, he didn't say it would hurt so why won't your GP let you try it?

[Keith1231 in reply to SueJohnson]

She, my GP, said she sent the study to him in her initial email. They didn't give an opinion on whether it would work or not just that it was proven to have been effective for RLS. Therefore, not licensed for that use.

[Joolsg in reply to Keith1231]

Gabapentin and pregabalin are not licensed for RLS either, but GPs prescribe it.How infuriating.

Can you see another neurologist? Not many neurologists are knowledgeable about RLS in the UK.

[Keetmama in reply to Keith1231]

Most of what people take for RLS is not labeled for use on RLS ! And most of what is labeled for use on RLS we are now told not to take. Unless there dopamine agonists have been taken off the licensing.

[Madlegs1 in reply to SueJohnson]

Exactly. A really bum attitude.

[SueJohnson]

Where do you live? Perhaps I can give you the name of a doctor knowledgeable about RLS and maybe one that has prescribed dipyridamole.

[Keith1231]

Thanks Sue. I live in North Norfolk near Cromer in the UK.

[SueJohnson in reply to Keith1231]

I'm afraid I don't know anyone near there.

[Keith1231 in reply to SueJohnson]

That's okay I have replied to my GP giving her my thoughts.

[Zenawarrior73]

hi Keith could you link the study please I’d be interested to read that.

I really hope you get this sorted.

[SueJohnson in reply to Zenawarrior73]

movementdisorders.onlinelib... and

sciencedirect.com/science/a...

[Zenawarrior73 in reply to SueJohnson]

Thanks Sue you are a star

[Restylegs]

I'm going the doctors next wk , I've just dr googled it looks promising , ill see if I can give it a go she's been trying to get me off sifrol for ages

[WideBody]

I love Doctor's first rule is to do no harm yet they prescribe DA Drugs that destroyed my life.

Here is the study

movementdisorders.onlinelib...

Dr.Serge Ferre answered my e-mail. So there are no excuses.

I am back to taking dipyridamole nightly. because it works.

Dipridamole works because of the way the brain deals with an iron deficit. Does your RLS respond to iron supplements?

[violetta254]

Dipyridamole was completely ineffective and actually made my legs worse. It also gave me a serious full time headache just as my neurologist said it would. The study used only people who had NOT been on any other drugs for RLS and did say that the previous use of other drugs might counter indicate for effectiveness. My take is I wouldn't spend much time trying to get this drug until we see more successful studies with folks who have previously used other drugs like pramipexole and figure out how to mitigate the headache side effects.

[DNoda]

i haven’t augmented on DA’s and tried dypiridamole. Unfortunately also useless.