Hi I'm 18days into my effort to come off pramipexole I'm finding it very hard but managed to reduce slightly my average prior to my reduction was .78mg daily but now 18 days later is .63mg daily.
Is this slowly enough or not?
I see yet enough neurologist, my third, at the end of the month don't know what the outcome will be but my GP did mention a new drug but he wasn't sure if the dosage!
Keeping my fingers crossed.
Well done that you started and still persisting after 18 days.
From the dose values you give, I'm guessing that you're taking the extended release version of Pramipexole.
I have read that -
"Pramipexole should be tapered off at a rate of 0.52 mg of base (0.75 mg of salt) per day until the daily dose has been reduced to 0.52 mg of base (0.75 mg of salt). Thereafter the dose should be reduced by 0.26 mg of base (0.375 mg of salt) per day"
However, it seems to me that you may be reducing in steps of 0.13mg i.e. half a tablet or even 0.065mg a quarter of a tab. Either way I'm not sure how you managed to reduce to 0.63 as 0.65 is a multiple of both these amounts, not 0.63.
This is slower than the recommended taper regime I've read, but I think it is a better regime that the one recommended. Reducing by 0.26mg per day I'd say is much too fast.
One guide you could follow is that when you reduce the dose, RLS symptoms may get worse, then settle down again after sime time. If this is the case, you could wait for the symptoms to subside nefore making the next reduction. That is, if they do settle, see below.
The final step, i.e. from the lowest dose to nothing is the worst step for symptoms and at that stage you have to be extra careful.
However, it does appear that you intend to find out what your RLS will be like without any medication at all. If that is what you intended then you are on the right track.
If that is not what you intended then I would have suggested that you started on an alternative medication BEFORE you started reducing the Pramipexole. Otherwise you may end up causing yourself more distress and discomfort, at least in the short term than is necessary.
There are several options for alternatives.
One alternative is another Dopamine Agonist, Ropinirole or Rotigotine. In this case, it wouldn''t have been necessary to reduce the Pramipexole before switching.
Since you are already on an extended release DA, there is no real benefit to switching to another DA. So I wouldn't recommend this.
Another option is a Gabapentinoid. If you don't intend to see what your RLS will be like without any medication then it is advantageous to take the Gabapentinoid at least several weeks before reducing the Pramipexole, it can help reduce RLS symptoms whilst still taking Pramipexole but does take weeks to find an effective dose and for it to take effect.
As it is, your withdrawl symptoms may be worse than they need to be and if you only start a Gabapentinoid after stopping the pramipexole completely, your RLS will not be covered for several weeks.
It might be a good idea to nform yourself of the alternatives and other options and how to manage the switch before seeing your GP. GPs notoriously lack expertise when it comes to RLS.
For more detail follow this link and scroll down to the section headed "Augmentation".
uptodate.com/contents/treat...
Many thanks Minerva the way I have been reducing my tablets of Pramipexole is probably not conventual but what I am doing is missing one of the 0.26mg on days that I don't feel to bad usually alternate days. I tried to get some of the 0.0188 mg from my GP but for some reason refused the practice runs a complicated system of ordering drugs that are not on repeat prescription so at the moment I'm stuck when I see the neurologist at the end of the month I can bring up the system or see what alternative he suggests I just hope he his more sympathetic than the last one
Hi, to be honest I am rather confused by what you write, I'm not sure how your reduction strategy is working. You also don't appear to know the difference between extended release Pramipexole and immediate release Pramipexole. There is also no such tablet as 0.0188mg.
0.26mg is extended release and 0.18mg is immediate release, that may be why you were refused.
I suggest you wait until you see the neurologist before you do anything else and hope what they say makes sense to you.
Did you have success on the tablet , have you come of it because of augmentation ,I have just started taking them two weeks ago , I have just had the 6 th good night I am on 18 mg , all these tablets scare me with the side effects , I think I have had the lot it all works for a bit then back to square one , I suppose we never give up , good luck
Hi beady3
I am trying to come off the pramipexole because they no longer worked due to augmentation side effects bad but reducing slowly. When I first started on pramipexole with the lowest dose I.e. 0.0188 mg the effect was magic but it didn't last long and my dosage increased until recently I was on 0.52mg and. 0.26mg daily on the advice of GPS and Neurologist. My rls is bad twitching and jerking legs at night as well as bad insomnia making my life hell.
If it's Pramipexole you're writing about I think perhaps you mean 0.18 mg not 18mg. You'd have to take a very large number of tablets to get 18mg, (100 times 0.18mg), and it would probably make you ill.
You should be OK on 0.18mg for quite a while without augmentation as long as you don't increase the dose. However, if you've augmented before on some other dopamine agonist, then augmentation might occur sooner on Pramipexole.
If you do start to have problems with a dopamine agonist, if you've not tried an alpha 2 delta ligand before, you could try one of those, Gabapentin or Pregabalin. Theyb don't cause augmentation.
Hey. I came off pram about a year ago. I bridged it with gabapentin and took Ambien so I could sleep. Once I was off the pram I stopped the Ambien. Now I take Horizant and bolster that will 200 mg of gabapentin in the evening. Not perfect but livable.
God bless.
Great to hear that's working for you. We can't get Horizant in the UK unfortunately.
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