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Restless Legs Syndrome

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Pramipexole

34th profile image
34th
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hi everybody, i am 83 years of age. having had rls since 1957,

i had been on pramipexole for 18 years. over the past year i have been trying other medication none of which helped me. the latest was Robiqual xl.

my rls was getting worse , sometimes lasting 48 hours of manic jumping around.

this time i managed to get to the doctors and jumped around her surgery. she suggested cutting the tablet in half for a week then to drop them off altogether. no replacement was forth coming.

the next two weeks was resulted me being on a different planet. i was lost in my own home.

my wife kept bringing me back to sanity.

after a number of falls and severe back pain i called 111. i was taken to hospital where i spent two weeks . i had no more rl. and i was prescribed pramipexole 0.18 one tablet three times a day.

no rl for three weeks now.

my regards to all.

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Madlegs1 profile image
Madlegs1

I trust that you have access to a good lawyer?

You were suffering from severe augmentation from years on Pramipexol.

You ended up in hospital.

They probably gave you opioids for the 2 weeks relief..

Then they send you home back on a high dose of -- guess what? - yes- Pramipexol!!!

It is hilarious if it weren't tragic.

"Carry on doctors" wouldn't be in it.

Please research "augmentation" and read some of Sue Johnson's replies to many posts on this site.

Good luck.

And - seriously- get that lawyer!

SueJohnson profile image
SueJohnson

Welcome to the forum. You will find lots of help, support and understanding here.

I am so sorry you had to suffer so from an ignorant doctor. You can't cut the Robiqual xl tablets. I'm amazed your doctor doesn't know this.

Do be aware of the signs of augmentation which are when you have to keep increasing your dose to get relief, 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. If that happens you will need to come off the pramipexole. Report back here if that happens and we can give you better advice than your doctor gave you.

Have you had your ferritin checked. That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

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...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, including HRT, 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, fennel, 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, CBD, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

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.

SueJohnson profile image
SueJohnson

Why did you try other medicine when you had been on pramipexole. My guess is that it was no longer controlling your symptoms. This is a classic sign of augmentation.

In that case it is just a matter of time and likely a short time before you suffer from augmentation again at which time you will have to come off it as I mentioned because it will only get worse.

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