Rls

[Henshaw241241]

I have hadRLS for years climbing walls and just came in after walking around I am on pramipexole the doctor did put it up to 4 tablets 3 weeks ago and they are so bad now I am coming off. Them slowly but this is the worst I have ever had which I could have my legs cut off but a bit of good news my doctor is going to revere me to see a neurologist as urgent it will be about 4 to 6 weeks I am hoping something can be done can't put up with any more I haven't had much sleep for weeks I am writing this now my legs are going mad Tony

[Graham3196]

If you like I can send in a private message a list of things to try. It is things that seem to have the general agreement of the experienced contributors to this forum. You might have tried them all but perhaps there is something there that will help.

Let e know if you would like to get this

Graham

[Henshaw241241 in reply to Graham3196]

Please could you send me this [email deleted for your own security, Henshaw241241]

Graham3196 will private message you on this community. (Kaarina - volunteer)

[Joolsg]

Hi Tony,

I've replied to you under the post you made on Pippins page.

As I said on there, don't just stop the pramipexole cold turkey as you will fall straight into severe withdrawal. Do it slowly, dropping one tablet every 2/3 weeks.

The codeine you are taking will help but ask the GP for something stronger like tramadol.

Do get the gentle iron and magnesium. They won't stop the withdrawal , but they may help a little.

If you can get hold of some cannabis ( Yes, I know it's illegal in the UK) it really helps with withdrawal. I used it for about a week and it gave me 1/2 hours sleep during the worst of withdrawal but watch out for panic attacks if the cannabis is too strong or you take too much.

Take it slowly. This link will help your GP in the meantime.

rls-uk.org/treatment/

[jigglylegs]

I’ve been on Pramipexole for quite a number of years and didn’t start on such a high dose I’m assuming you are taking .088mg. I have found over the years that increasing the dose doesn’t improve the RLS. Have you looked at your diet as certain foods trigger my RLS. Let us know how you get on with the neuro.

[dolphins16]

Hi Tony,

Ive had RL for 25 years now. Tried a lot of different treatments like you. Do try and wean off the pramipexole.

I didn't and went cold turkey. I was like a train wreck for 10 days. Ive been under the care of a neurologist for 15 months with varying degrees of success.

One thing that I would recommend is B3 or Nicotinamide. 500mgs twice a day. Its a safe dose. It was recommened to me by a specialist from a different medical field after positive feedback from his patients with RLS. I have been able to drop off one of my night meds since taking this.

I have an appointment with a Professor of Sleep Disorders this week. Hopefully will be able to find out about latest treatments and current research. Will let you know.

[Henshaw241241 in reply to dolphins16]

My pramipexole what my doctor gave me 4 tablets made me worce so like a lot of people last night I took 2 for about two weeks then 1 for two weeks I had about 4 hrs sleep that's good for me I am waiting to see a neurologist they told me be about 4 to 6 weeks not bad I will let you know Tony

[Herve]

Hello Tony

Sounds like you should have been referred to a Neurologist some time ago. You say your Pramipexole had been increased to 4 tablets per day: I assume by this you mean 350mcg x 4 times daily. This is likely to have provided little benefit over the usual maximal dose of 350mcg x 2 daily.

You have probably experienced severe augmentation as direct result of high dose medication with Pramipexole.

I hope all goes well when you get seen by Neurologist.

Pierre Herve.

[Henshaw241241 in reply to Herve]

Still climbing the walls last 2 weeks on pramipexole no sleep for weeks tried everything but nothing works. Can't wait to see the neurologist. They. Told me 4 to 6 weeks might hear next week it would be nice to get some sleep

[Henshaw241241]

I took 2 pramipexole last night and I had about 4 hrs sleep like people told me you much come off them slowly when I was takeing 4 it was really makeing me fill really badthen I will take 1 for about two weeks I am waiting for a app neurologist about 4 to 6 weeks time Tony

[LotteM]

Good for you, Tony, to already have dropped two of the pramipexole and about to drop another. 👍🏻

Mind you, not all neurologists are well versed in rls, so make sure you know a lot yourself by reading info on rls-uk.org and rlshelp.org. In NO WAY let the neuro up your dose pf pramipexole again, or switch you to another dopamine agonist like ropinirole or Neupro.

Meanwhile, I hope the withdrawal doesn’t get any worse than it is now.

[Lindy14]

Hi Henshaw,

Halleluyah! Your Doctor's decided that he/she cannot manage your RLS alone. The neurologist they refer you to should be someone who know enough about RLS to be able to consider less well know medication/combination of medication to tackle your problem.

My own experience with a neurologist has taken a fair while, but with patience we've got a combination that works for me. We tried just one medication but this didn't work. We tried other medicines and eventually tried Pramipexole which initially this worked by itself, but eventually it got to a level that the neuro considered was too high to go any further. She then tried it with a small dose of another medication (this was Gabapentin). I've been gradually increasing this medicine and have been on the same combination for nearly a year with a dramatic reduction in my jerks (which usually occur at night).

You may find that if the neuro is reliable that they would be willing to try experimenting with different combinations until you come to something that makes life more pleasant for you.

I don't want to make it sound as things will be rosey when you've seen the neuro, but you never know, you might get some more constructive help.

Lindy