Back Again

[Lineker]

After listening to my doctor I stupidly went back onto Pramipexole. Big mistake. After a slow taper I am now on my third day without Pramipexole. As you can imagine I am not feeling great. To me it feels like a bad dose of flu. Once again I am struggling to get any decent sleep.

At the moment I am taking 600mgs of Gabapentin per day, but I’m not sure it’s having much affect. I have ten days supply of Gabapentin left before I switch over to Pregbalin.

Am I heading in the right direction? Should I bin the remaining Pramipexole tablets? Any suggestions for dealing with the month ahead? I just want to return to some sort of normality and I’m prepared to lock myself away to achieve it. All suggestions welcome. Thank you so much.

[Joolsg]

Yes Bin the Pramipexole. In desperation, you might be tempted to take one.All I can do is wish you strength. I used cannabis for the worst nights and I did manage to get 20 mins sleep, after 4 days and nights of zero rest. Also resting with legs upright against the wall and using a deep tissue massage gun helped distract from the constant leg jerks.

[Lineker in reply to Joolsg]

Thanks Jools, I guess that was the kind of reply I was hoping for. I am imagining the ‘legs up the wall’ treatment at four in the morning!

[Joolsg in reply to Lineker]

Sounds like your doctor is in the Dark Ages.If you augmented before on a dopamine agonist, you WILL augment again if you restart. Do tell your GP to read the latest research.

The gabapentin dose you were taking wasn't high enough to cover severe RLS and often, because Pramipexole causes permanent damage to the dopamine receptors, gabapentin and pregabalin don't work well for us.

I wasted 5 years on Oxycontin and pregabalin and believed Professor Chaudhuri when he said there was nothing else he could prescribe and 4 hour's broken sleep was the best I could expect. He was wrong.

Your next step should be ensuring serum ferritin is above 100, preferably 200 via pills/infusions.

Then try either increasing gabapentin dose to 1800mg via 600mg doses in the evening, 2 hour's apart. Or pregabalin 150mg/200mg at night.

If that doesn't help, you can then ask for Oxycontin (Targinact) which is licensed for RLS and if that doesn't work, ask for Buprenorphine pills.

So, you still have lots of options.

Bear in mind it takes months for the dopamine agonist withdrawal to settle and your dopamine receptors to repair.

[Lineker in reply to Joolsg]

This is such a thorough answer. I really appreciate it. I have only been on Pramipexole for short periods of time ( a couple of months) and I’m hoping the withdrawal won’t be too bad. Thanks again for all the help. It’s been a lifeline.

[HappyGreenBean]

Hey Lineker I replied in another thread about a couple of things I was doing for augmentation which may/may not help you as you're getting those dopamine receptors back up and running:

healthunlocked.com/rlsuk/po...

Good luck!

[Lineker in reply to HappyGreenBean]

Love the name! I’ve looked up your thread and I’m going to try out some of your ideas. Thanks for getting in touch.

[HappyGreenBean in reply to Lineker]

Not a problem, at all. I'm so sorry you're in this position. I've regularly been legs up the wall at 4am! There's a few other things I use and try and all of them help but getting on to the right medication for you is going to have the biggest impact on your quality of life.

[JenniferBut in reply to HappyGreenBean]

I have to chime in, I am also with the ole legs up the wall in the wee dark hours!

[HappyGreenBean in reply to JenniferBut]

If Aliens ever do pop their heads in to check in on us, we'll definitely be the ones causing the most confusion!

[Simkin]

Yes bin the pramixepole and 600.g gabapentin too low.As Joolg said you need to go higher. At least 800mg.

[Keith1231]

Hello Lineker, I have suffered RLS for years and have been prescribed with those meds that are now thought to make things worse. December 22nd 2023 I started taking pregabalin 150mg. I also researched for other daily medication that I take that have an impact on RLS. I stopped taking 5, which were Atorvastatin, Montelukast, Fexofenadine, Lansoprazole and Mirtazapine. Restless legs has stopped. I have since seen my doctor who has prescribed alternatives. Check your meds.

[Ex-rugbyplayer in reply to Keith1231]

Hello,

I didn’t realise that both Atorvastatin and Lansoprazole can affect RLS, I’m on both, must have a chat with my GP about getting alternatives.

Thanks for the information, always knew this site was the best.

[SueJohnson in reply to Ex-rugbyplayer]

All statins makes RLS worse for most. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

Lanzoprozole is a proton pump inhibitor (PPI) - an antacid that treats heartburn, ulcers, and GERD, can interfere with the absorption of iron and magnesium. There is no evidence I can find that they it otherwise exacerbates RLS symptoms although RLS-UK says most proton pump Inhibitors worsen RLS.

Gaviscon Extra Strength Tablets and Liquids are a safe substitute. Do not take Gaviscon within 2 hours of taking iron.

[Ex-rugbyplayer in reply to SueJohnson]

Thanks Sue for your information.

[JenniferBut in reply to Ex-rugbyplayer]

I found the statins to really make the RLS worse for me. So I stopped. its incredible just how many drugs can rev RLS up. I think I have stopped them all except the low does of SSRI. That one is a work in progress!!

[Ex-rugbyplayer]

Hello,

Sorry to hear your having such a hard experience.

I was on Pramipexole and hit augmentation, I took advice from the great people on this site. I now take 1200 mg of Gabapentin a day, 200gms in the morning, 200 gms at lunchtime, 200 gms at teatime and 600 gms an hour before bedtime.

[Lineker in reply to Ex-rugbyplayer]

Thanks so much for contributing. Looking ahead, I’m hoping a routine like yours will do the trick.

[Grumpies]

Funny how different tablets work for people , I find Pamipexole is the only medication that works for me . As for Grabapentin , word of warning I was on it for a short while and twice I fell asleep at the wheel of my car . Thankfully no harm was done but as soon as I came off them I was fine again !

[Lineker in reply to Grumpies]

Like you, I find Pramipexole works really well. I just hate the idea of not knowing what the long term effect are!

[SueJohnson in reply to Grumpies]

Just be aware of the signs of augmentation which are when you have to keep increasing your dose to get relief (the maximum is .352 mg), or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. You may be lucky enough to never have them but you need to be aware of them.

[Deesee]

I got off Neupro (rotigotine) after years on ropinirole, then Neupro. At the end of the weaning off time, I used cannabis to help during the transition. I took 1800 mg gabapentin in three 600 mg doses, two hours between each dose, to help in the transition, which I continued to take once I was off the dopamine agonist. Last September I consulted with Dr. John Winkelman at Mass General in Boston who suggested 2 200 mg of Pregabalin which I take at one time, early in the evening. At bedtime I take 300 mg of gabapentin. Since that switch in September, I do not feel sleep deprived, which I felt for years. If I have any breakthrough symptoms,I manage them using cannabis. That’s what works for me. I also keep track of my ferritin level which historically has been low for me, and I’ve had multiple infusions over the years. Invariably I know when that dips low as symptoms increase. But that’s been good now since last April. I’m finally at a time when things are feeling more normal. I’ve been through the sleepless nights, days, and more nights. It’s just tortuous to go through the withdrawal, but so worth it to be on the other side. The worst I had was 42 hours without sleep, or even able to sit down. Yeah, I found some relief with holding my legs on a wall. Sitting in a hot shower was a temporary relief, once three times in one night. I also found using Icyhot helped, even Vicks helped a little. Many nights I just stood all night leaning on a kitchen counter. I’m 78 and have had RLS for for a dozen years. I think I also had it many years ago when I was pregnant. So really, the battle will be won, just keep fighting.

[Lineker in reply to Deesee]

Your text is inspirational, like so many on this site. Your words have given me the courage to keep battling. Thanks so much for contributing.