RLS BE GONE

[wildlegs]

I've been taking Tramadol for 15 years with great results. About two years ago it was only 80% effective and I asked for another Tramadol but my pain doctor gave me 1 MG of pramipexole instead and it did the trick. I take 100 MG of Tramadol and 1 MG of pramipexole and for the last 2 years I've been pain free at night. No more walking instead of sleeping. I'm 80 and all is well.

[Joolsg]

Oh dear.Your new doctor has done you a great disservice.

Pramipexole is no longer prescribed by top experts. It WILL cause drug-induced worsening and getting off it in your 80s will be really hard. And 1mg is negligence! Double FDA approved dose. The Mayo Clinic Algorithm and the new American Academy of Sleep Medicine Guidance makes it clear that dopamine agonists like Pramipexole should only be used as drugs of LAST resort.

Where are you? We can recommend a good US doctor who will help you OFF Pramipexole and onto a long half life opioid like methadone or Buprenorphine.

Did the new doctor take full iron panel blood tests?

[wildlegs in reply to Joolsg]

I'm in wisconsin and my original doctor retired and the new doctor is keeping me on the pramipexole. Says as long as it works no problem. Yes they check my blood and so far all is good

[Joolsg in reply to wildlegs]

He's wrong.The AASM guidance has relegated all dopamine agonists to 'end of life scenarios'.

Join rls.org and find a good doctor near you.

Dr Andy Berkowski operates out of Ohio. Hopefully SueJohnson will be able to recommend someone near to you.

app.elationemr.com/book/rel...

[SueJohnson in reply to wildlegs]

As Joolsg says you are taking twice the maximum of pramipexole which by definition means you are suffering from augmentation and need to come off it.

You were given this information before but I will repeat it.

Ropinirole, pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.

First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut if needed.

To come off pramipexole, reduce by half of a .088[.125] tablet 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

If tramadol doesn't cover your RLS you need a stronger opioid. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.

Have you had your ferritin checked? If so what was it? This is the first thing a doctor should do for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 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. 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. If you can't get an infusion, let us know and we can advise you further.

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...

Who is your doctor? I know ChrisColumbus gave you the name of a doctor from the Restless Legs Foundation. Is that your doctor?

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin although it doesn't for all, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

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.

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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

[SueJohnson in reply to wildlegs]

Ferritin isn't checked in a normal blood test or even in a test for iron and if it is doctors will say it is normal, but what is normal for others isn't normal for those of us with RLS. Do you know if your ferritin was checked and if so what it is. If not, call your doctor's office to ask.

You want to come off the pramipexole now as coming off it when you are even older will be a lot harder.