Meds after augmenting

[Mazzi2]

Hi my hubby has started the process of coming off pramipexole just wanted to know while doing this successfully what did you use and when you finally came off what are you left taking as I know that most people still need to stay on something for the rest of thier lives.thank you in advance for your input 😊

[BJamn]

Hi, Getting off Pram was very difficult. I started taking Gabapentin throughout the day. I tried Horizant but it was prohibitively expensive. I now take about 700mg of Gab split throughout the day in 100mg caps. It takes several weeks for the Gabapentin to kick in so you may have to give it time if you go that way. In order to sleep while getting off on Pram I took Ambien. It only takes a day or two to get off of Ambien so it was worth it for the sleep.

[Mazzi2 in reply to BJamn]

Thank you

[Jules1953]

I used 5mg Endone, which is oxycodone, but only during the last few months when things got really bad.

[Mazzi2 in reply to Jules1953]

Thank you

[Restless123]

I take 2 to 3 gaberpinten starting at 5:30 then another a bedtime 11pm. Sometimes an 5mg oxy. I have to change regimes around,sometimes every 2 or 3 weeks. Nothing is as good as when Mirapex was working but can’t ever go back there again.

[Mazzi2 in reply to Restless123]

Thank you

[DicCarlson]

Worth a shot to have a complete iron panel to test for Ferritin, Total Iron Binding Capacity, 5 Saturation, etc. Many docs will say some low numbers for Ferritin are normal but even normal (under 75 for Ferritin) can cause RLS.

[Graham3196 in reply to DicCarlson]

A bit late but I thought it worth the comment that if you have RLS then its worth getting your ferritin level up to 350 just to see if it goes away. Some people find that raising their ferritin to 75 or 100 works for them but others find they need 350. The only way to know is to try it. I haven't heard from anyone who says that anything below 500 would do any harm except in some unusual circumstances. That's why you need to check with your doctor. I saw 5 doctors before I found one who would arrange an intravenous iron infusion (IV) but the other doctors could only give me vague reasons NOT to have an IV such as "all injections carry some risk just by penetrating the skin" How many injections have you had in your lifetime from doctors, dentists , anesthetists and nurses and, of course blood sampling and blood donating? How many splinters have you had? In my opinion that's a risk worth taking to sleep a few more hours a night!

[Joolsg]

During withdrawal I took 50mg tramadol every 4 hours during the worst days ( 10-14 days after last dopamine agonist) and also illegal cannabis which gave me 30 mins sleep after 3 days of zero rest/sleep.

I then took tramadol and Gabapentin but had to switch to OxyContin and pregabalin.

I now take OxyContin and medical cannabis ( it was legalised in the UK in 2019).

[Mazzi2 in reply to Joolsg]

Thank you for your reply

[RLSofManyYears]

Hi, whilst I'm glad to hear that he's coming off the dopamine agonist I know that he is facing a difficult time as he does that. First of all he needs to reduce slowly. You don't say what he is currently on but there is advice from the likes of Manerva on the best strategy for reduction to zero.

I had a difficult time coming off Pramipexole and before that Ropinirole. However I'm off the DAs now and am now on 200mcg Temgesic (mild opioid) and 300mg Pregabalin. I now only get the occasional jerking of my legs and generally sleep right through the night.

There are gradually more folk taking Temgesic now in the UK, despite resistance from some GPs. Again there is information on this site on how to tackle your GP about Temgesic.

I do hope he can find the best solution.

[Mazzi2 in reply to RLSofManyYears]

Thank you glad you did it successfully

[involuntarydancer]

As others have said, it is a hard road getting off a dopamine agonist. I would second all the advice to go very slowly reducing in tiny increments with long gaps between reductions. Make sure serum ferritin is high - like over 100. There is evidence this is helpful during reduction.

Have an opioid to get h through the final stages.

Then the fun begins. It feels great to be off the dopamine agonist - I felt ‘myself’ for the first time in years BUT How to treat the rls?

It really is trial and error to come up with a good system and many people end up combining a low dose of a couple of drugs. It’s important to remain engaged and keep trying different options (while at the same time giving each new system a chance to work). The most commonly used drugs are the anti-convulsants (gabapentin/pregabalin) and opioids (temgesic/ buprenorphine, oxycodone or tramadol). Lifestyle changes can also help - particularly adopting a ‘clean’ diet.

Rls is a dreadful condition but it does push us to try new things.

[Mazzi2 in reply to involuntarydancer]

Thank you

[Doings]

I’m in similar situation so would be really interested in learning how he gets on and what he uses. I’ve been on pramepixole for over 30 years and it’s not working any more.

[Mazzi2 in reply to Doings]

Wow 30 years is a long time

[Doings]

I meant 20 it was a typo.

[Mazzi2 in reply to Doings]

Still a long time