Need help again!!

[Loopylegs]

Hello fellow sufferers! I've had almost 1 year of practically symptom free, up until recently however, after a lot of trial & error I discovered that the lowest dose 0.088mg pramipexole & 600mg of gabapentin at night has helped me get between 6 & 8 hours symptom free sleep for almost one year! I felt like I got my life back, but in the past few weeks the symptoms are slowing creeping back in, first my knees to my ankles, then my arms and now shoulder shivers!! I don't want to increase the pramipexole as I'm pretty sure I'm probably augmenting, I'm probably lucky the low dose lasted as long as it did! Any idea what the next step might be for me? Has this happened anyone else? I tried high doses of gabapentin before I added the pramipexole and it did nothing for the RLS but with the pramipexole it really helped, do i stay on the pramipexole & up the gabapentin dose? Any advice would be much appreciated, I've been down all other routes, ie. Iron etc.. All is good in that department, I just want my sleep back again! Thanks in advance!

[SueJohnson]

You say you were on a high dose of gabapentin before. How much were you on?

[Loopylegs in reply to SueJohnson]

Hi Sue, I was on 2100mg of gabapentin for 2 months, it did nothing for my rls, pramipexole stopped my rls symptoms but gave me insomnia so when I combined the two, I slept well for a year, 600mg of gabapentin and 0.088mg pramipexole was what worked up until a few weeks ago

[SueJohnson in reply to Loopylegs]

Did you take it all in one dose?

[Loopylegs in reply to SueJohnson]

3 doses of 600mg from 5pm with the last 300mg before bed around 11pm

[SueJohnson]

I was hoping you were taking it all at once so I could have told you it wasn't well absorbed above 600 mg, but you were taking it the right way, although the 300 mg should have been taken at 5 pm . Only one other quick question - you say you have been down the iron route. Did you have your ferritin checked? Or just take iron on our own hoping it would help?

[Loopylegs in reply to SueJohnson]

No I've had all the blood iron checks, all is well above, I have inherited rls, both my grand parents & parents suffer from it, along with my siblings too, but I'm probably by far the worst case in my family, most of them manage it with some degree of success with opioids, but opioids stopped working for me long time ago unfortunately, just trying to figure out what to do next, I know more about RLS than my GP, I've been to sleep consultants & neurologists but they haven't helped much either, I find other RLS sufferers give the best advice to be honest!

[SueJohnson in reply to Loopylegs]

You say you had all the blood iron checks, but the normal ones don't check for ferritin. Did you have your ferritin checked and was it over 100?

[Loopylegs in reply to SueJohnson]

Yes, it was 225

[SueJohnson in reply to Loopylegs]

I don't really have any ideas on the pramipexole/gabapentin, although I guess you could try increasing the gabapentin. If you decide to come off the pramipexole, you could try dipyridamole which has help many. 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... movementdisorders.onlinelib...

[Loopylegs in reply to SueJohnson]

Thank for all your advice Sue, I really appreciate it

[TheDoDahMan]

You say you've tried opioids, but Dr. B feels that methadone is the best. Will Ireland allow it? What about Bupe? I'm on 10 mg of methadone per day and it stopped my symptoms in their tracks, for over 3 years now.

[Loopylegs in reply to TheDoDahMan]

Not a chance of being prescribed methadone in Ireland I'm afraid, the methadone programme here is to help addicts come off heroin only.

[TheDoDahMan in reply to Loopylegs]

I thought that might be the case, although I can't, for the life of me, understand why. Buprenorphine has many advocates on these pages - have you checked into whether it might be a possible solution for you? Best of luck in your attempts to get off the dopamine agonists!

[Continuous]

When my RLS started playing up, I divided my Pramipexole dose. I take it in the morning and evening. So far it’s worked.

[SueJohnson in reply to Continuous]

Have you thought about coming off pramipexole and switching to gabapentin as up to 70% of people will eventually suffer from augmentation which believe me you don't want.

[Loopylegs in reply to Continuous]

Im on the lowest dose, ive tried halving it but my rls plays up really bad withoout it.

[CookiePooki]

If there's a cure its because God has healed. Other than that I personally don't think there is a cure. I've had this nonsense for at least five years now and nothing has controlled it. Keep praying.

[SueJohnson in reply to CookiePooki]

No - it is because God has suffered from it 😀