Replacing Pramipexole with Pregabalin - Restless Legs Syn...

Restless Legs Syndrome

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Replacing Pramipexole with Pregabalin

sidepocket profile image
16 Replies

Hello Everyone, I have had RLS for at least the past twenty years with the past eight years taking 0.50mg of pramipexole with some success however recently I have been experiencing augmentation, my GP advised me to stop pramiopexole and begin with 50mg of pregabalin, well I can honestly say that did not work out very well. First night walking in circles all night RLS was so bad with about twenty minutes of sleep, second night 100mg pregabalin results same as first, third night 150mg pregabalin still walking in circles only very very tired and frustrated so I decided to go back to pramipexole at least temporarily. I was thinking that maybe a better option would be to slowly reduce pramipexole and introduce pregabalin over a month long time frame. Any comments or advice would be much appreciated. Thanks in advance for taking an interest.

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sidepocket
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SueJohnson profile image
SueJohnson

Yep you should not stop pramipexole cold turkey as you discovered especially since you were on the maximum dose. Go back on the ,50 mg and reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. On the pregabalin, beginning dose is usually 75 mg pregabalin. You would normally start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off pramipexole for several weeks. After that increase it by 25 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. Most of the side effects of pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. Since you are already on pregabalin I would stay on 150 mg until you are off pramipexole for a few weeks. and your symptoms have settled. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg of pregabalin) daily." If you take calcium don't take it within 2 hours. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

sidepocket profile image
sidepocket in reply toSueJohnson

Thank you so much Sue, that looks like a workable plan also will be researching Mayo Clinic info Re-RLS

SueJohnson profile image
SueJohnson

Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal.

sidepocket profile image
sidepocket in reply toSueJohnson

No I have not. I will contact my GP and make necessary arragements.

SueJohnson profile image
SueJohnson

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

sidepocket profile image
sidepocket in reply toSueJohnson

I do find that distractions and music help somewhat. As far as other meds go I take valsartan for high blood pressure and rosuvastatin high cholesterol.

SueJohnson profile image
SueJohnson in reply tosidepocket

As far as rosuvastatin, unfortunately all statins make RLS worse. Nexlizet (Nustendi in the UK) s 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 although the FDA does show it increases RLS for some people 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.

sidepocket profile image
sidepocket in reply toSueJohnson

Thanks for that information I had no idea that those medications affected RLS. With having this knowledge I feel more positive in moving forward with a strategy to combat RLS. I think your husband has the right idea, hopefully I will be able to reduce my cholesterol through diet and talk to my GP concerning blood thinner.

SueJohnson profile image
SueJohnson in reply tosidepocket

We both were entering at the same time. See my comment above about valsartan which I can't find so will repeat it. I was thinking of another drug instead of valsartan. It is probably safe for RLS or at least I can't find anything that says it isn't safe.

67Waterman profile image
67Waterman

I can feel for you. I have been through what you are going through. I can only give some thoughts ... I am currently on 300mg Pregabalin and 0.125mg Ropinirole (pramipexole) every night. I did increase my dosage of Pregabalin up to 450mg (the maximum allowed for RLS) but found there was no improvement. I keep the Ropinirole because it works. My Professor has said, rightly or wrongly, that such a low dosage is now fine, despite the fact that, like you, I also went through augmentation after having taken it since 2007. Unfortunately, we are all different in the way that our bodies react to drugs, and what fits one person, does not fit another. But you are not alone .... remember that.

sidepocket profile image
sidepocket in reply to67Waterman

Thank you for your reply. Your comments are very much appreciated. I feel like I will be doing something close to what you are doing concerning dosage, and continue to try and eliminate pramipixole.

Theonlypetied profile image
Theonlypetied

the advice you have had above already is excellent. I have nothing to add other than to wish you the best.

sidepocket profile image
sidepocket in reply toTheonlypetied

Thank you for the good wishes, they are much appreciated.

Doings profile image
Doings

i was in similar situation, i slowly weaned from Pramipexole over a few weeks reducing by a little a week waiting to settle before further reducing. In fact i had no problems at all, i took advice from this site. I began on low dose of Pregabalin before finishing Pramipexole so overlapped a couple weeks. Now I’ve been on Pregabalin about 2 years and (touch wood) its been really effective.

Good luck.

sidepocket profile image
sidepocket in reply toDoings

Thanks for that information, this is exactly my plan and it is nice to hear of a positive result. Started last evening, reducing pramipexole by 25% without too much of a problem so here's hoping!

707twitcher profile image
707twitcher

How did it go? I'm in a similar situation. thanks

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