Post Ropinirole update

[RLSAndy]

Hi guys, i havent posted on here for a while. Last year i eventually got off the horrible Ropinirole with no help from my GP. I was told to come straight off in which i did until i found this place where i started back and came down slowly. It was hell, body spasms, anxiety and depression, 4 hour nights broken sleep etc etc…

i eventually came off and was already on pregabalin while self medicating with 60mg codeine i was acquiring as my GP wont give me opioids.

ive now been off ropinirole for around six months and take 600 pregabalin in two doses half two hours before bed then the other two during the night.

Some nights i can get 7-9 hours some 5, most nights are very broken and as im a chef working 14 hour shifts when i finish at night i have to go to bed when i get in and this plays havoc with my rls. Ive now come to the conclusion pregabalin simply dosent work enough for me.

last week i finally got my app with the lovely Dr Chris Murphy in MCR hoping that from advice on here he would suggest the Buprenorphine patch as others have had very good results with. Dr Chris is a lovely, friendly and assuring man who listens and dosent patronise as we all know most GPs do.

he has agreed the Buprenorphine sounds like the best plan of attach for me but he wants bloods taken again first to rule out magnesium deficiency. He has written to my gp to advice the drug and we are hoping they will prescribe it, he has assured me if they wont i can join his NHS surgery and have to travel there every three months for my prescription which isnt to bad as im in Birmingham.

im praying this works as life is still very very hard due to my rls and equally hope this helps others in any way, as always please feel free to ask me as many questions around what ive been through and ill reply with as much detail and help as i can 🙏🏻

[Joolsg]

That is great to hear Andy.Pregabalin and gabapentin often do not work after dopamine agonists.

The patch works well for some.

But- it does NOT last for 7 days. Every person taking it reports that it wears off at day 4 or 5. So you must get enough patches to allow for replacement every 4 or 5 days.

Alternatively, ask for sub lingual pills.

Many of us do very well on the pills.

But be prepared for side effects in the first month.

Severe nausea, panic attacks, depression and sweats are common.

For nausea- medical cannabis worked brilliantly for me. It takes around a month to get a prescription from a private clinic. I took 0.3ml of cannabis oil with 20% THC every night for a month. It stopped the violent vomiting and nausea. I then slowly reduced cannabis and nausea had gone.

The panic and anxiety started after a month on Buprenorphine. I took 50mg pregabalin for a month. It stopped the anxiety. Then I slowly reduced.

For sweats- the pregabalin and a small dose of cetirizine anti histamines worked well.

So- Buprenorphine pills gave me my life back. Zero RLS EVER.

Good luck!

[RLSAndy in reply to Joolsg]

Thank you Jools. I have ane can get cannabis without prescription so thats ok. It has never worked for me when used with the other drugs but ill definitely bare it in mind with the patch of needed.

[Joolsg in reply to RLSAndy]

Read DavChar and Lotte posts about the patch.They worked out a method that worked for them.

The majority seem to be on sublingual pills. Average UK dose is between 0.4 and 0.8mg at night.

[SueJohnson]

To come off pregabalin you need to do so very slowly to avoid withdrawal effects. Reduce by 25 mg every 2 weeks. If you do so you will have very few or no withdrawal effects. If you do have any, slow down even further, In very very rare cases you still might have withdrawal effects.