Off Mirapex

[Moonpen]

Hello everyone, I am now 5 days off Mirapex of course was a slow weaning process. I am not sleeping but maybe 30-45 min here or there, having to walk the floors. I’m sure a lot of you would say get an opioid but docs are not too willing to write scripts. I know it is all individualized but can anyone tell me how long this extreme RLS will last? It feels like my insides are jumping all over the place, I somehow need to get some sleep.

[Joolsg]

The withdrawal lasts around 14 days - and as you get near that 14th day, the constant spasms and leg jerks and lack of sleep will ease off.

Some very lucky people find they can manage without meds but you may find you will need to take something.

First ensure your serum ferritin is above 100, take magnesium citrate at night, avoid anti histamines and anti depressants which worsen RLS.

If you cannot get sleep after the 14/21 days then ask your GP to discuss alternative meds.

Alpha2delta ligands ( Gabapentin, pregabalin & Horizant in USA) are a possible replacement for the Mirapex and pregabalin did better then Mirapex in a 2015 trial.

Well done for getting off mirapex- things will settle and you will feel better soon.

[Moonpen in reply to Joolsg]

Thank you for the support. I am taking magnesium and other supplements and my ferritin level is 400. I’m hoping it will ease soon or at least before I lose my mind.

[Joolsg in reply to Moonpen]

I promise it gets better. It’s torture while you’re going through it but you can do it. Stay strong- we will be thinking of you.

[Madlegs1]

If the doctor will prescribe Clonidine and Valium for a fortnight, they will help get through this time. Only use them sparingly.

Jools has given good advice for the longer term.

Also take vit c constantly, and juices. Keep hydrated.

Good luck.

[involuntarydancer]

Wow! Well done for getting this far. It is a huge achievement.

Depending on where you are situated, you could consider trying kratom which I have heard is helpful during the acute phase you are in at the moment. It is not legal in UK but can be ordered from sites in Holland which will post it.

I agree with the others that symptoms should start to ease as you get towards day 14 or so. However, sometimes they don't - my theory is that the lack of sleep itself exacerbates RLS (in a cruel irony) and you may need something to break the vicious cycle of extreme symptoms causing lack of sleep which in turn causes extreme symptoms. My consultant refused to prescribe opioids when I was withdrawing from a dopamine agonist and my symptoms did not abate until I persuaded my GP to prescribe oxycontin which I took for a while until my symptoms improved.

[Moonpen in reply to involuntarydancer]

Thank you for responding. I am at day 11 and symptoms are a little better so I’m praying will keep going in that direction. I am really determined to try and not take any meds. At present I am working on an elimination diet and have an appt with a functional medicine doctor in May. I will post any progress as I go.

[mogerrober]

The worst was over in less than a week. Not a nice week though, but doable. Hang in there.

[RLSdaily]

Great job! Stay strong it gets better. I have been there and it was killer hard. Knowing it will end makes it worth it.

[Artjr102]

I’m not sure which state you were in but if marijuana is legal try Gorilla glue gelato or Moon Dawg. I can pretty much guarantee you will get at least 2 to 2 1/2 hours sleep from either. If you put it in the food form it may get you 6 hours plus of sleep. It all works around my internal timeclock for me.

[funnyfennel]

Well done, its something I have considered but dare not do. However my x2 Mirapex and 5mgs Oxycodin keep me fairly stable, but more than 3 hours sleep is the best I can expect....Please tell me, why you wanted to stop and what your dose was...x

[Moonpen in reply to funnyfennel]

My dose of Mirapex was 0.75mg and it’s was not working. I was augmenting and probably had been for a while as I was having to increase my dose every 2-3 months. I am now 15 days without Mirapex and I won’t lie it has been hell but I refuse to take another dopamine agonist as they all seem to cause augmentation. I just got my doc to give me clonazepam and neurontin, though I’m hoping I can just use these as a bridge until my body can adjust.