Aftermath of Pramipexole

[sigurdur]

Dear Restlessleggers,

I have now been without pramipexole for more than 2 weeks. I successfully used Kratom to wean off it. Even though Kratom helped me a lot, the process was not without suffering. I would have gone mad without Kratom. Now 2 weeks after my last dosage of this poison I still suffer nights where my feet, or actually just my left foot starts bubbling like crazy in the night. As I don't want to build up tolerance to Kratom, I have tried to keep it low, but the irritation is so intolerable I end up taking a bunch just to put me to sleep.

One night I successfully used a leg massager(RENPHO) to counter the RLS in me feet, and fell asleep, but woke up later to find that the RLS devil had moved to my arms, like when I was augmenting from pramipexole. I almost felt it was mocking me saying, ha ha ha if I can't drive you crazy using your feet I will just get you in your arms. Uffff....

My question to you those have successfully weaned off pramipexole.

How long did it take for you to be rid of the augmenting symptoms?

Did you feel depressed and hopeless during that time? If so, did you understand that this was the aftermath of coming off this drug? What helped you?

Best

Siggi

[SueJohnson]

Yes they are symptoms of DAWS. As far as how long it lasts, the minimum is 3 weeks, but it can lasts many weeks or months. As far as the depression Trazodone or Wellbutrin are safe antidepressants for RLS. Others are not.

[sigurdur in reply to SueJohnson]

3 weeks is tolerable. After this experience I have become very sceptic of doctors and pharmaceuticals, so will seek natural remedies before going on any medications again. Before I trusted doctors almost blindly, but never again.

[SueJohnson in reply to sigurdur]

Have you read the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... It is the bible for treating RLS and can be trusted.

[sigurdur in reply to SueJohnson]

Thank you.

[Joolsg]

As you are not taking any meds to replace Pramipexole, you will suffer both withdrawal symptoms baseline RLS.The withdrawal can last several weeks, even months.

Johns Hopkins say that after withdrawal from Pramipexole, you should be drug free for 2 weeks to establish your baseline RLS.

Establish if it's mild, moderate or severe and then treat accordingly.

In your case, it would seem you have been drug free for 2 weeks and thaf your RLS falls in the severe

category.

You should push for blood tests and iron infusions if serum ferritin is below 100.

If that doesn't help, you will need ongoing medication.

Pramipexole can cause permanent damage to dopamine receptors and many of us then will need alternative medication.

The feelings you are experiencing of hopelessness and depression are DAWS, dopamine agonist withdrawal syndrome. Pramipexole increases dopamine in the brain, a pleasure hormone. Take it away and depression happens. For most of us the depression settles after a few months. If you treat the RLS, and sleep properly, it helps reduce the depression and hopelessness.

I really hope it settles and you get the RLS under control.

If it persists, you may need a mood stabiliser like wellbutrin or trazodone. Both are safe for RLS.

[sigurdur in reply to Joolsg]

I am managing the pain with Kratom, and it works more often than not. Kratom can also be used to lift the mood. My fear was mainly that it was going to be like this from now on, and I don't think I could do that.

[Simkin]

My GP at the time put me straight onto neupro patches which worked immediately but years on I now know that neupro patches are as bad as pramipexole.

[Sleeplesniights in reply to Simkin]

what are the withdrawals of coming off neupro

Have been on it for a year

[Simkin in reply to Sleeplesniights]

Well I was on neopro for years & pramipexole for years before that so everyone has different symptoms (or not) depending on how long they had been on the drugs.

I had shaking all over & severe nerves & could not stand more than a day before I took another drug to help.

But in all honesty Pramipexole & Neupro gave me relief for years & although coming off them was hell I almost want to say it was worth it for years of relief.

But I am 70 & research has moved on hugely and in those days there was no other option.

We did not know then about gabapentin etc for rls so you need to look at medicines NOW not what we took back then.

[Sleeplesniights in reply to Simkin]

I am on Gabapentin 600mg but doesn’t help

I bought some cbd oil and it helps a little

[Simkin in reply to Sleeplesniights]

Yes well that is why I am on gabapentin AND oxycodone & that works for me so far

[phantom388]

I have been off prami for around 3 months now, and feel better for it. I still get RLS at night but it’s manageable providing I follow a reasonable routine, lowering my glutamate seems to help, oddly enough raw tomatoes (one of my favourite things to munch) make it worse, but my RLS is milder than it was previously, Sue has some great suggestions re non pharmaceutical approach, and diet (for me) definitely impacts the severity. I do take a single codeine before bed that helps, and sometimes have to have a couple of ibuprofen around 3am, quick renpho massage gun, stretch, bio freeze and can usually get back to sleep. Not perfect but I couldn’t go back on a DA again, it was probably the worse RLS I ever had when I got augmentation. Best of luck with your journey

[sigurdur]

I am happy to report that all is getting better. Now on my 4th week without Pramipexole. I still take kratom 10-12g and sleep like a baby. I will continue using it as the only relief for RLS, as long as it works.

[phantom388]

I have been adjusting my diet as well, Kratom not being an option here, so playing with different types of magnesium and iron and it’s about as good as I am going to get it. Certainly much better the further away I get from Prami, glad you have found something that works for you! I sort of have in my mind that I now have control of my RLS rather than it controlling me, I can’t beat it, but I can certainly influence the level and timing (well 80% of the time!)

[sigurdur in reply to phantom388]

Prami is just pure poison. I am so happy I got off it. After trying cold turkey a few months back, I have been dreading it. But now I am off. 😀