Using ropinirole

[Pooh78]

I take. 5mg ropinirole for RLS and don't like the side effects heavy eyes and recently sensations in wrists and hands Early evenings sometimes very painful cramp like pain in a foot or a leg severe and lasts less than a minute Not sure if augmentation is occurring and am gradually going to reduce dose to see if side effects improve Have taken all 3 das overtime not sure where to go from here

[Joolsg]

Normally I would say wait and see. However, you say you have been on all the other DAs. Why did you switch? Did you develop augmentation on them?If so, another DA will cause augmentation eventually- it's just a matter of time.

When on Ropinirole I used to get horrendous cramp in my toes and arches but haven't had them since getting off the med.

DAs are no longer first line treatment amongst experts because of the high risk of Augmentation and how unbearable it is.

The Mayo clinic algorithm now puts the Alpha2Delta ligands as first line treatment.

As always, make sure your serum ferritin is above 100, preferably 250 and serum iron above 60.

[Pooh78 in reply to Joolsg]

I switched from pramipexole as for many months had a low sodium reading and the doctor was concerned the medication might be the cause I was put on patches but it didn't seem to arrest my rls thus I ended up on ropinirole Yesterday I started a new conversation with my doctor re my side effects and to organise a blood test I voiced the fact that the doctors have little knowledge of rls and requested him to do some research on the subject which he has promised to do

[Joolsg in reply to Pooh78]

That's promising. If your GP is willing to read up on RLS and work with you, that's half the battle.The sensations in your wrists and hands do sound like the first signs of augmentation. Don't increase the dose of Ropinirole. Instead, monitor and raise your serum ferritin.

If the RLS starts earlier in the day, increases in severity and moves to other body parts- it's augmentation.

The solution is to reduce very, very slowly by 0.25mg ( maybe even 0.125mg) every 3 to 4 weeks and starting a new med like pregabalin. Pregabalin takes about 4 weeks to take effect but usually doesn't control the RLS symptoms until about 2 weeks after the last dose of Ropinirole.

If withdrawal symptoms are tough ( they are for the majority) ask for an opioid like Oxycontin to help.

Let us know what your blood results are and ask your GP for a print out.

[Pooh78 in reply to Joolsg]

Thank you for taking the time to reply Have also come across a device called therapulse which has been developed by doctors It seems to have lots of good reviews may not be the answer to all our prayers but probably worth investigating with a very low medication dose Can anyone comment

[Joolsg in reply to Pooh78]

I suggest you put up a new post headed Therapulse and ask if anyone has had success.I've spent hundreds of pounds on supplements and devices. None of them has worked and some have made my RLS much worse- particularly the ones with electrical currents like revivitive foot stimulator. Therapulse would probably make my RLS worse as it sounds similar.

Luckily I've been able to sell them on ebay and make back some money.

As with all supplements/gadgets, there will be some who report success. We're all different.

[Ott83 in reply to Joolsg]

Joolsg do you have any useful links in relation to the treatment you mention please.I have suffered with augmentation firstly with Ropinerole and now with Rotigotine and Pramipexole simply didn’t work, thus I read your comment with interest

[Joolsg in reply to Ott83]

Read all my recent posts. Particularly on Buprenorphine. I'm about to post another article just published in my MS magazine.RLS isn't taught at medical school or during GP training or to neurologists in the UK , hence the appalling lack of knowledge and poor treatment.

To get any help from your GP, you have to research extensively so you can inform your GP of the best treatment. Sad but true.

First get off all dopamine agonists. Slowly over at least 3 months and you'll need an opioid to deal with the withdrawal symptoms.

After DAs, the usual treatment is pregabalin BUT that often doesn't help people who have experienced augmentation and bad withdrawal ( Dr. Buchfuhrer believes this is because the DAs have permanently damaged the dopamine receptors).

Start pregabalin 4 weeks before the last dose of dopamine agonists. It works well for many but if it doesn't help you after 3 months, ask for a low dose opioid. Buprenorphine has been a life saver for me and several others on this site.

[Elffindoe]

Hi, to help your GP, you may wish to share these links with them

mayoclinicproceedings.org/a...

cks.nice.org.uk/topics/rest...

Therapulse has been mentioned before. There are various products called therapulse so it depends which one you're referring to.

There is no consistent evidence that any of them will work for RLS, including the one that's a horse blanket.

See this post

healthunlocked.com/rlsuk/po...