Hi guys from the uk.I’ve been on pramipexole for 3 /4 years now and got to the stage I am now on 3 0.18 tablets at night. They have stopped working for my rls now and the doctor has told me to reduce them by one tablet every 3 nights and then go onto gabapentine is this too quick to come off the pramipexole or should I just stick with it .after reading a few horror stories about coming off pramipexole I’m starting to get a bit worried about what I’m in for coming off them
Thanks
It’s too quick and you’ll have bad withdrawal symptoms. It’s effectively cold turkey. I wish GPs would bother to do basic research on reducing these meds.
Even the med leaflets warn about fast withdrawals.
Manerva was on pramipexole and recommends reducing by half a 0.125mg every 2 weeks.
Top doctors in USA recommend a minimum of 3 months & up to a year for higher doses like you have been on.
Also raise your ferritin above 100, preferably 250 as there is evidence it can lessen withdrawal symptoms.
Thanks for the replyThink I will need to speak to the doctor
Reduced by one tablet tonight have really bad restless arms and legs it is now 2.30 am don’t think I will be getting any sleep tonight
Withdrawal is hellish- non stop super intense RLS & leg jerks.
You may need an opioid to help deal with the symptoms. My GP gave me 50mg Tramadol- I took them every 4 hours for the last 3/4 weeks of withdrawal from Ropinirole.
My GP knew zero about dopamine agonists/augmentation/withdrawal - most have no knowledge as RLS isn’t taught at med school.
I suggest you get the smaller tablets i.e. the 0.088mg ones. This is 88ug.
Cut some in half i.e. 44ug and reduce in steps of that (44ug) in no less than 2 weeks.
If you cut by 180ug you will get severe withdrawal effects as Jools says and as you've already experienced.
Gabapentin is worth trying, but as Lotte says, you can't really judge how effective it's going to be until you have stopped the pramipexole. It doesn't work for everyone, but it works fine for me after taking pramipexole for nine years.
I reduced my 1.5mg to 1 mg and had 18 hours of hell. I am now on 1.25 mg and doing ok. What do you think I should do next? Also, I am getting off of Cymbalta. I was at 60mg now at 40mg. My pharmacist doctor wants me to reduce by 20mg every week. My Ferritin level was 38. How much Iron to take. I'm sorry to put so much on you, but the doctors don't know a damn thing.
I usually suggest reducing pramipexole in steps of half a 0.125mg tablet. Of course the smaller the reductions you make the longer it will take to reduce.
There is some evidence to suggest that it's harder to reduce from a lower dose than it is from higher doses.
As you're still on a high dose you could try reducing in steps of 0.125mg until you get down to about 0.75mg and then start reducing in steps of half 0.125mg.
If at any time reducing by 0.125mg casues severe withdrawals then you can start reducing by half a tab then.
You could also alter the length of time between reductions. This may depend on how long the withdrawals last. So if withdrawals last 10 days, you could try reducing after two weeks. You could wait longer.
So your next step would be to reduce to 1.125mg, then 1.0 then 0-875, then 0.75.
The key to taking oral iron effectively is not so much how much you take but how you take it.
Therer's a lot of support for taking "gentle" iron, ferrous bisglycinate which is an over the counter supplement. It's advantage is that it causes less gastrointestinal upset. It will come in a daily dose.
The problem with oral iron is that it is quite diffcult to actually absorb it because we have a protective mechanism to avoid getting iron overload. The following are ways in whih absorption can be boosted.
1) only take it once every two days, not daily. You can take a double dose.
2) take it 30 mins before or 2 hours after eating
3) take a vit C tab or drink a glass of orange at the same time.
The aim is to increase your ferritin to at least 100, it make take at least 3 months to do this.
Hi Resi, You could try coming off Pramipexole and going onto Gabapentin but once you have been on a Dopamine Agonist, going onto a A2D Ligand such as Gabapentin does not tend to work so well for RLS. I did just that and had a very unpleasant 6 months only to discover that Gabapentin effected my eyesight. I am now back on Prolonged Release 0.28 mg Mirapex (similar to Pramipexole) but also take 2 co-dydramol at night which works well. I also take Senokot at night for constipation. You may need to look at your triggers as well and have your ferritin levels checked. Good luck.
Thankyou
Resi, Joolsg has given you good information. Take it slow is the main message, alongside to listen to your body. Make note of how long it takes for the increased symptoms = withdrawal effects to last. And wait a few days or more to let your body and mind recover before your do the next reduction.
Meanwhile, discuss with your doctor if she/hr is willing to prescribe a strong painkiller like tramadol temporarily to help with the worst withdrawal effect.
Also, discuss that gabapentin takes a while, some 3-4 weeks usually, to start working. This mean that you will have to start the gabapentin well before your last doses of pramipexole. But do remember that effectiveness of the gabapentin can only be assessed after the withdrawal symptoms have eased. So don't take a too high dose for of gabapentin until well after the last praxipexole dose.
And indeed, have a look at you ferritin. It should be high for people with RLS. If below 75-100ng/l, start taking gentle iron. You don't need a prescription, but make sure you don't have iron overload. Take it once every other day before bed (empty stomach); that way raised your ferritin as quickly as the standard 3x daily, but without much of the nasty constipation side effects.
Good luck and keep is posted. You'll be better once off the pramipexole. And you acted timely, by reacting to loss of efficacy and not waiting to full-blown augmentation to set in. Well done.
I’m new to this group and am desperate to know more. I’ve been on Pramipixole for over 20 years I take 4 x .088 mega day But it’s no longer as effective as it once was I’m reluctant to increase but have no one to advise (GP knows nothing) . Can you tell me what “augmentation” means please and how does it “set in” - sounds frightening.
If you’ve been on pramipexole for 20 years you will almost certainly be suffering augmentation, especially on that high dose.
You start taking it- it’s miraculous- no more RLS. Then it stops working so your doctors increase the dose. And so it goes on until the RLS completely rules your life, becomes more intense and starts earlier in the day and moves to your arms, hands, back, face.
The theory is that increasing the dopamine agonist over stimulates dopamine receptor number 3. Dopamine receptor 1 then starts crying out for a ‘hit’ as well and causes your RLS to go crazy. ‘Pouring gasoline on the fire’ is how experts describe it.
The only solution is to reduce the pramipexole VERY, Very slowly- in your case at least a year because of the length of time you’ve been on it and the extremely high dose.
Most people on here have been in your position and managed to withdraw- but it is really tough.
Most need a strong opioid like tramadol or OxyContin to deal with the withdrawal symptoms as each dose is reduced.
You should get full bloods and ensure serum ferritin is above 100, preferably 250- but your doctors will tell you anything above 12 is normal. It isn’t for those with RLS.
You should also start replacement meds about a month before your last dose of pramipexole. Alternative meds include Gabapentin, pregabalin and Horizant or opioids like tramadol, OxyContin or Buprenorphine/Temgesic.
Read all recent posts and the replies and Manerva’s replies as he can tell you the best dose reduction for pramipexole.
Hi Resi,
I'm coming off pramipexole very, very slowly, waiting after each dose reduction until symptoms ease before I reduce again. This seems to be taking about 4 weeks.
I'm getting near the end - down to half a 88 microgram tablet i.e. 44 micrograms. I may try a quarter of a tablet i.e. 22 micrograms (very difficult to cut such small tablets into quarters) before taking the plunge with nothing.
My neurologist started me on gabapentin some time ago (it takes a few weeks to become fully effective), so I'm taking both drugs. The gabapentin is helping a bit. I'll see how it goes after I'm off the pramipexole but may try reducing that too, as it's making me feel a bit 'drugged' and unbalanced during the day.
My attitude to withdrawal has kept changing. Sometimes I've felt "get it over with and reduce more quickly" and other times "you have to be able to function, so go more slowly". On the whole I've chosen the latter. I'm retired so had a choice. If I were working I couldn't have done it more quickly and kept my job.
Doctors and even neurologists know very little about the terrible withdrawal effects you can get from dopamine agonists. Even my neurologist suggested I just stop the final tablet. I suspect that when I talk to him again, six months later, I'll have just managed to do that.
Rls
Meds change 
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