Joolsg

Hi Katerina,

I am so sorry that Lyrica & Tramadol haven’t helped.

I still think you would be better on another opioid like morphine sulphate. The only reason I say that is because the Neupro patch is another dopamine agonist and you augmented on pramipexole. That means you are more likely to augment quite quickly on the patch.

My RLS didn’t settle down for about 18 months after coming off Ropinirole so I still think it is too early for you- particularly as you have MS as well.

I totally understand why you want to consider such a step though- it is horrible to have uncontrollable RLS with a young child, MS and working full time.

However, opioids are increasingly becoming the first line treatment for RLS and I think it would work better for you. Low dose morphine sulphate twice a day and Lyrica in the evening would be a better option.

Involuntarydancer and quite a few others augmented on the patch so read through her posts. You might also consider Dipyridamole.

I really hope you find the right combination of meds to control your RLS.

Thinking of you

Jools

Katerina22 in reply to Joolsg

Τhank you,Julie!Unfortunately doctors here are reluctant to let me use opiods permanently.They only let me use tramadol twice a week or so.Still seeking for relief.

Reply (1)Report

Joolsg in reply to Katerina22

Hi Katerina

Would this link help to persuade your doctors?

healthunlocked.com/api/redi...

Reply (1)Report

beady3

Yes I take 2mg patch and 100mg Pregablin am not doing so bad, I shall not be changing good luck

involuntarydancer

So sorry to hear you still having problems, Katerina. I tried the patch and found it helped somewhat for a while but I started to augment after about 8 weeks. I think at one time I was using it at the same time as lyrica and also a very small dose of OxyContin. I have a feeling that the patch worked best at that time - better than when I was relying on it alone.

Can’t remember what your iron levels are like. If you are going back on a dopamine agonist it is a good idea to make sure they are high. Also stay on a low dose of the d/a (I would suggest the lowest - 1mg of patch or at most 2mg). Also if you find it stops working take a break of a few weeks (maybe use a low dose opioid or increase your lyrica dose for this time) rather than increasing the dose. Alternatively you could try using the patches for 5 out of 7 days a week maybe. Though I think for that to work you need to be on 1mg rather than 2.

In this way you might extend the time the patches work for you indefinitely.

Katerina22 in reply to involuntarydancer

Τhank you so much!!

Reply (0)Report

Rosieme

Which patches are you using? I was on Butec patches but became allergic to them. I’m intolerant to many medications, hence the patches. My GP seems to simply shrug away my worries

Katerina22 in reply to Rosieme

Neupro patches.But i havent tried them yet.

Reply (0)Report

involuntarydancer

I have just been reading back over your recent posts. Are you still experiencing those whole body jerks? Are they your worst symptoms now?

I have read of two or three people who returned to a very low dose of dopamine agonist to control PLMD as there is very little else that would work for them.

If the jerks are your main problem it might well be worth your while to try the patches (at a low dose) to see if they help as it sounds like your quality of life is not great at the moment. If you do return to a dopamine agonist keep your serum ferritin high and don’t continually increase the dose. It might be necessary to take drug holidays to reset your receptors from time to time but I suppose that could be worth it if you get relief while on the d/a.

Hidden

How is it going Katerina? I just started this combo myself, so far so good.

Katerina22 in reply to Hidden

Ι am changing meds at the time being so i cant have an opinion yet.I ll post about it when i ll be ready to do it.Hope you continue to get relief!!

Reply (0)Report