Persantin

[Stayte]

Hello

Has anyone been prescribed Persantin.

Thank you

[ChrisColumbus]

Various people have tried to get dipyridamole (Persantine) prescribed for RLS in the UK particularly after Diego Garcia-Borreguero's positive study in 2021:

pubmed.ncbi.nlm.nih.gov/341...

You might try asking Keith1231 whether he finally managed to get to try it

[amrob123]

It is no longer available in Australia so I had it made up by a compounding pharmacy. It was quite expensive.

[SueJohnson]

You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. However there have been no studies on whether it will work if you have been on a DA which you have been on and apparently augmented on so I doubt if it will help. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

Put dipyridamole in the search box and you will see some posts on it.

I see you list gabapentin. Are you taking it? If so how much?

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. This is the first thing a doctor should do. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

[Stayte in reply to SueJohnson]

Thank you Sue .

I have had RLS for over 10 years and have been prescribed probably all recommended meds. All stop working , Augmentation etc

I’m currently back on Pramixepole which is actually allowing me to sleep, although it never worked before & I am totally tired at all times & I know it is not recommended now.

I Have had Neurology input & the Neurologist I recently saw recommended Pramopelin as an ‘old fashioned drug that often works ‘ ? although he didn’t seem to have any knowledge or interest in RLS and was very keen to basically dismiss me.

So it goes on.

Thank you

[SueJohnson in reply to Stayte]

What happened on gabapentin? Did you take it when you were on pramipexole (is that what you augmented on?)