Has anyone come off pramipexole and o... - Restless Legs Syn...

Restless Legs Syndrome

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Has anyone come off pramipexole and onto the Neupro patch successfully, without side effects? How did you do it?

Tpebop profile image
7 Replies

Hello all. I may be beginning to not get a complete night's sleep on x3 0.088mg pramipexole. Lots of you sing the praises of the Neupro patch and I was thinking I could try that again (due for a meds review with GP soon). However, largely due to lack of understanding about how they work, I ended up on 3mg/24hours which knocked me out during the day. Has anyone else tried changing to the patch from pramipexole? Did you start on the patch and still take the pramipexole? Did you just start on the patch at the lowest dose and it just works after a week or two (it didn't with me)? Should I've been more patient? Does anyone NOT experience severe sleepiness as a side-effect? Why so many questions? :) Experience details and advice would be welcomed. Cheers, Tpebop, Kent, Britain. P.S. Now the Paralympics are on it made me think of any sports RLSers'd be good at using the kicking usefully. What about swimming or taekwondo? Does anyone use it to their advantage?

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7 Replies
Doversoul profile image
Doversoul

I tyried to come off Adratrel to Neupro patches. I wasn't given any advice how to do it, and swopped over immediately - wow I was in hell, how I didn't chuck myself off Beechy Head is a wonder. Phoned GP and told me to carry on with the Adratrel and slowly decrease the doseage over 2 weeks and increase the NEupro accordinly. I found taking the two together 3mg Adratrel and 2mg Neupro work very well together. GP wouldn't allow me to keep with both so I went with the Pathces and over an 8 week period dosed upto 4mg Neupro. Life was hell. The patches were difficult to keep in place and I had to use paper plaster/ tape to assist keeping in place. Finding an unused part of my body each week was also a problem - and amugmentation was worse - every 4/5 days. Switched back to Adartrel as soon as I could, and went to see a neurologist - he precribed Clonezpam - 2mg a ady along side 3mg of Adratrel daily. This has worked for just over a year with augmentation every month for upto 72hrs. Now the augementation free period is down to 18/19 days , and I have asked to see a Neurologist at William Harvey who speciality is movement disorders - I have RLS and PLMD.

Hope the Neupro works for you - in the early days of my RLS, I was prescibed Pramipexole but as soon as I was taking 2mg daily dose I suffered balance problems - unable to mount stairs /ladders without dizzy attacks, and would fall asleep anywere, and couldn't be trusted to Drive a car .

I am also in Kent - and wish you good luck with the Neupro

nightdancer profile image
nightdancer in reply to Doversoul

2 mgs of Mirapex/Pramipexole is a high dose! No wonder you were dizzy and fell asleep!

I use the patch, and when i first started on it i wasnt on anything. then i did a drug holiday, went from the patch to mirapexin, i just switched without weaning and had no problems. Was on the mriapexin for 2 months made me too sleepy in the day so switched back to the patch without weaning, again i was fine...

The patch should work straight away, it did for me. after 24hrs you should have the full effect from it, after a couple of days on the 1mg, i would suggest upping it. i increased mine myself, then i informed my doctor and he adjusted my script. Yes i did get sleepy during the day, so what i did, and i DONT recommend this to anyone else, i did this for me, i cut the patch, i dont want anyone telling me i shouldnt have please. My doctor knew what i was doing and because i am really sensitve to all the RLS meds. he went with it. The patch has been the only med i have been able to tolerate and it has been my life saver...

In the end, we have to do what our bodies are telling us. and med adjustment is one way to get the relief we need to sleep.

As long as you are not going over the dose recommended for RLS on any med. that one adjustment not to do because if you go over the dose to get relief then you are getting augmentation...

This is only my experience when switching meds. as always we are all different and get different reactions to meds...

Oh, to add, because i am so senstive to the meds.. i only leave the patch on for 6-7 hrs at night, it works for me i sleep at night and i keep the side effects down. Again i do this for me.......and when the patch stops working i will do a drug holiday again...

CathyS profile image
CathyS

I switched from Sinemet to the patch without a hitch. The first day I used Sinemet too but later realized I just hadn't given the patch long enough to work. I expected relief right away, but have learned that I need to put it on 5-6 hours before I plan to be relaxing. For me it is a MIRACLE!

Angierob profile image
Angierob

Hi all, being in Kent too, I'm beginning to wonder if this is something to do with living there!! I'm on a mix of meds too - started on ropinirole, got up to 3.5mg nightly, then weaned myself down to .25mg while adding gabapentin at 200mg per night. So far, this works for me - although not every night. I saw someone on another forum saying that sleeping on your stomach helps and, randomly, it seems to work for me too, although not the most comfortable position!

@Angierob, It works okay for the legs to settle a bit, I caution people

to pay attention to how their neck is positioned. I had a stiff neck for

the next 2 days for sleeping in that weird of a position.

Tiredparent profile image
TiredparentRestless Leg Syndrome

I'm on pramipexole, gabapentin and patches, The patches have been brilliant for me although of course I still do get RLS. I suffered from augmentation so life was really tought before I used the patches. I don't feel sleepy using them, I sometimes find they make me itchy but not always and I've no idea why! I always put mine on after a shower and secure it with 2 plasters. For me, the best ones in terms of not causing skin irritation are Sainsbury's own brand sensitive plasters. I then use talc afterwards as they don't stick well if there has been any talc used anywhere!

I'm in Surrey!

Rosie

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