Hi I’m a newbie. Been on pramipexole for 7 years and experiencing severe augmentation. What are others experiences on coming off this drug?

[Nightowls]

Pramipexole withdrawal

[Joolsg]

I came off Ropinirole in 2016 after severe augmentation. It was hellish. No sleep for 4 straight days & constant RLS.However, once through withdrawal, RLS much less intense. I'm now on 0.4mg Buprenorphine and zero RLS and sleeping 8 hours a night.

There is hope, but first you have to get off Pramipexole very, very slowly over a minimum of 3 months. You'll probably need an opioid and cannabis to help.

There are several alternative meds and ensure serum ferritin is above 100, preferably 250.

[Nightowls in reply to Joolsg]

Thanks so much, that’s encouraging.

[Dougg]

I'll second Joolsg's comment that it's important to go off Pramipexole very slowly. I was on Pramipexole for some time and trying to slowly wean off of it. Every time I downshifted the dose, it was difficult. Fortunately I had oxycodone available at the time to assist. Right when I got to the point of eliminating Pramipexole entirely (which I wasn't looking forward to because of the previous challenges in reducing doses), I heard about kratom and decided to try it. I switched over to kratom in a single day (replacing the last dose of Pramipexole and the oxycodone) with no side effects or withdrawal symptoms. Since then, kratom has been my main RLS mitigation element, with oxycodone as a back-up.

Best of luck in your journey! You're in a good place for support here.

[BocaMom in reply to Dougg]

Which strain of Kratom do you find most effective?

[Dougg in reply to BocaMom]

I started out with red Bali, which other RLS sufferers had recommended. If you are going to use kratom regularly, I recommend rotating strains to avoid building up tolerance. I’ve found that most “slow” strains of kratom work well for my RLS because they are calming to the body. You’ll likely need to do some experimentation to determine which strains work best for you.

[Spurdog1]

Hi Nightowl, I can only speak for myself. I was on 4 x 0.088 per night. by reducing by 0.044MG (Half a tablet) per month, I have reduced to 2 x 0.088MG per night. I may be fortunate, but I had no issues. I also was only on Pramipexole for a year (still taking).

[Elffindoe]

Hi Nightowls. You may read tales of how bad it CAN be to withdraw from pramipexole.

The best thing to do is withdraw slowly. How slowly you do it is up to you but like Spurdog I reduced the dose in steps of 0.044mg which is half a 0.088mg tab (which you may know as 0.125mg).

I reduced once every 4 weeks.

You may find as the dose gets lower, then withdrawal effects get worse So my last two reductions were 0.022mg, i.e. a quarter of a tablet.

You can try reducing more often, but I wouldn't do it in less than two weeks. That's around about the time withdrawal effects may take to settle.

I also started taking gabapentin which is one of the first recommended alternatives to pramipexole. The other is pregabalin.

As I reduced my daytime symptoms started fading then later I started sleeping better.

I believe I was very lucky, I don't recall having any withdrawal effects at all. However that may be because the reduction in augmentation was such a relief albeit very gradual.

If withdrawl effects are a bit too much you can ask your doc for an opioid, codeine or tramadol. This is temporarily whilst withdrawing. If sleep is a problem ask for a sleeping aid,

You'll have to see how it goes. I didn't need either!

The other imprtant thing is, as Jools says, is to make sure your iron levels are OK. This requires a blood test for serum iron, transferrin saturation, ferritin and haemoglobin.

If the first 3 are low then you have general iron deficiciency. If haemoglobin is also low then you have iron deficiency anaemia. The deficiencies need correcting.

If all the tests are OK then make sure you get the result for ferritin and if it's below 75ng/mL then start taking an oral iron supplement.

If you're on any other mediocations for any other condition then check that they're not on the list of meds which make RLS worser. If any are, then discuss with your doc about stopping them or switching to an alternative.

[WideBody]

I got off DA drugs in 2016, it was hellish. No sleep for about 2 weeks, sometimes for days. What helped was finding something todo that didn’t require thinking. I seriously polished our oven, at night. (My wife’s comment, “When did you do that?”) I did a lot of laundry and dishes.

Please come DA off slowly, I didn’t and it was a very dark time in my life.

I think it took at least a year if not more to fully come out of the fog of DA drugs.

[fishinphil1946]

I was on 2.0mg/day pramipexole for 7 years plus 1200-1500mg gabapentin. I gained 50 pounds. It has taken 36-38 weeks to get to ZERO pramipexole (0.125 less / 2 weeks). I also have family inherited peripheral neuropathy. I am not sure this week if I can't sleep due to PN in my feet and ankles, frequent urination being 75 year old male, or RLS from no pramipexole- very confusing. I was put on these meds by a sleep clinic and never monitored on dose or affects. Nonetheless, I hope to do some diet, exercise, and life style changes. I don't think I can make it any worse. My ferritin levels have been monitored 3 times and consistently are about 350.

I would like to reduce to ZERO gabapentin and start over. My capsules are 300mg; how can I reduce slowly? Are there lower dose solid pills that I can split. Maybe in a month I will have a clearer idea of life without pramipexole? Meanwhile, the consensus on this site and new information from the Mayo clinic would seem to support slowly getting off pramipexole and expect some hard nights for a while.

[Walks_a_lot]

Hi Nightowls! Don't give up! I developed pretty bad augmentation too. My SHrink wanted to keep upping the dose beyond that which the Internet told me was effective for RLS. He thought my RLS was just getting worse because I was getting older. I knew he didn't know what he was doing, so I decided to initiate a drug holiday to find out what my real condition was. First I took 3 months to wean off Prozac. Then I took another 3 months to wean off the DA's. I took hot baths every night, jogged in the early evening, napped a lot in the afternoons. It was horrible. I second the advice of others above to go slowly weaning off. I didn't realize it when I embarked on it, but there is a withdrawal syndrome for DA's also (how could there not be when they work on dopamine?), and it wasn't fun. You can help your mood by tapering slowly. The RLS symptoms will still have to be endured, but at least you won't be suffering horrible withdrawal depression at the same time. Be prepared to sleep anytime you feel tired and have the time available. A massage gun might help too. The end result for me, my RLS had not gotten worse. So don't be worried about that. When you come out the other side of this, it will be better!