Specialist in NW England

[Ced60]

Good Morning

Since dropping down my pramipexole from 6 tablets per day to 2 and starting on Pregababin my RLS has been off the scale… I have stopped going out completely and only put myself in situations where I know I will be able to walk which is the only respite I can get .

My GP a has done a referral for me to Salford Royal but I have been waiting now for months and with no sign of an appointment.

I have decided that I will pay to see someone privately but can’t seem to find a consultant in the North West who specialises in this condition and I wondered if anyone had any recommendations?

I am prepared to travel (even though the thought of being in a car for anything over about 20 minutes fills me with dread) .

many thanks in anticipation

[SueJohnson]

You have reduced your pramipexole too fast which is why your RLS has been so bad. Go back up to the dose where your symptoms were manageable and stay there for awhile before reducing in a much smaller amount and staying on that dose until your symptoms settle before doing it again. You may need a low dose opioid to help you. You never answered whether you had your ferritin tested. If not over 100 improving it to that helps a lot when you are suffering from augmentation and an iron infusion works fastest.

[Doings]

i was 26 years on Pramipexole and csme off by reducing by quarter of a pill every 2 w. I got my advice from this site as GP was no help. It worked really well for me and at half way point my rls stabilised so well i stayed at that level for longer before once again beginning further reducing by quarter pill.

About 2 weeks before the end i began on low dose Pregabalin so was overlapping. By time id finished Pramipexole my Pregabalin had kicked in and so far 2 yesrs on my rls is 98% under control.

Unfortunately there does not seem to be any specialists on the subject in the UK you have to become your own and hope that your GP goes along with your research.

Carol

[MrVimes]

My reply is similar to others. I was on 5 x Mirapexin for over 20 years and suffering from augmentation. It has taken me over 18 months to reduce the Mirapexin dose to two tablets while slowly increasing my pregabalin dose, which is now at 350mg. I cut my Mirapexin in half and reduced it by half a tablet at a time. My RLS is ok, but I still get attacks for an hour or two most nights. However, that is so much better than it has been in the past!

[Ced60]

Thank you so much for your responses , I will take your advice and increase my Mirapexin a tiny bit to try to regain some control and then reduce more slowly.

[Jukebox55]

hi… have you suddenly stopped taking 6 downnto 2 or have you been slowly reducing it? Are you taking gentle iron? I was on 4 and have reduced by half a tablet every month. I am now on 2. Going well. My doc wont give me pregablin or anything else that is highly addictive. Read up on thr iron info in this community. Sue and Jools have lots to say. Good luck

[Ced60 in reply to Jukebox55]

hi Jukebox55 , I have reduced gradually but on reading the posts probably not slowly enough . I found it reasonably easy to reduce down to 3 with the help of a Pregabalin but since then have been struggling … I’m going to try a quarter tablet a week once I get a bit more control.

Good luck with yours

[Ced60 in reply to Jukebox55]

I am taking the gentle iron in the morning and magnesium at night whilst taking care to leave time between those and Pregabalin

[Jukebox55 in reply to Ced60]

do take the iron every other day and away from food and with vit c. Have you had your iron levels tested? I take my iron and vit c at 3am when stomach empty and not about to eat! Good luck!

[LotteM in reply to Ced60]

Hi Ced, I hope increasing the prami a bit and then reducing mire slowly gives you some much needed respite. Take your time!

Also, maybe swap the iron and the magenesium: magnesium in the morning and iron just before bed. If you want to get your iron tested (full iron, ferritin and transferrin saturation are most informative for people qith RLS) make sure you stop both iron and magnesium at least two days before. The swap will not make a major difference, but for some it does, eapecially the iron in the evening.

Keep going. It can get better.

Kaarina and/or Jools can you provide names of specialists in the NW UK?

[SueJohnson in reply to Jukebox55]

That's ridiculous that your doctor won't prescribe pregabalin. Have you printed out and shown her the section in the Mayo Clinic Updated Algorithm on RLS? What does she expect you to do when you are off pramipexole - just suffer? You may need to change doctors or ask for a referral to a neurologist.

[Jukebox55 in reply to SueJohnson]

yes, I printed out five articles for her as she typically didn’t know anything about it. I am doing ok at the moment, down to two for the next month. I am not sure about pregablin etc… is that just to help you through coming off DA or is it long term. I guess I was hoping that as my iron levels improve, I wouldn’t need it. Have I got that wrong? Thanks so much for your expertise, it is so appreciated.

Les

[SueJohnson in reply to Jukebox55]

It's for the long term. It is the first line treatment for RLS today rather than the dopamine agonists like pramipexole and ropinirole. The beginning dose is usually 75 mg pregabalin. Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 25 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. Most of the side effects of pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium take it at least 3 hours before or after taking pregabalin as it will interfere with the absorption of them. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin) daily."

[phantom388]

hi there - I see Mr Christopher Murphy based out of Cheadle - specialist neurologist and well up on RLS, helped me a lot and he runs a sleep clinic as well. Very happy to recommend, you can Google him and arrange an appointment. If you want to cheat a bit, normally they need a gp referral, so say you are getting one and will bring it with you, and when you get there just say you forgot it, it won’t make any difference as he will assess you on his own basis. Best of luck. I am on the journey from Prami reduction across to Pregablin and so far so good, hope to be off Prami by April/may but taking it a step at a time

[Jukebox55 in reply to phantom388]

thank you. Is mr murphy nhs or private. If the latter, how much does he charge?? Might well give him a visit! Thanks!

[Kaarina Administrator in reply to phantom388]

Thank you for the recommendation. Much appreciated.

[Ced60 in reply to phantom388]

Thank you , I’ve made an appointment to see him at the Alex which is only a couple of miles from my home , 19th April cannot come soon enough .

[phantom388 in reply to Ced60]

good luck - what I like was he had an open mind about any treatment, focussing on what works for you, we changed medication types three or four times before I got to one that worked for me. I got him to write a letter to my gp with the recommendation and then got the GP surgery to raise the prescription. You can get a private one from him but they are more expensive.

[phantom388 in reply to Ced60]

how did you get on?

[phantom388]

you can book online if you Google his name, it’s under Circle health group, I think around £230 first appointment then £160 subsequent follow ups. I have met him at the royal Alexander hospital in Manchester. He has quite a few RLS patients, and is pretty switched on to the available treatments. Hope that helps

[Ced60]

What a lovely guy - made me feel completely at ease , listened to me , took everything in and offered me a range of options … he is booking an iron infusion for me and a sleep study and has written to my GP to ask them to prescribe Oxycodone and I think Rigotine ? Patch but told me that if that doesn’t work for me not to worry that there are lots of options . I felt heard for the first time ever. Cannot recommend him highly enough . Thank you