Coming off pramipexole

[moggie8]

Hello every everyone I did I post before but not sure if it came up,as I'm not used to posting stuff. So I tell my story again. I've been on 0.125 pramipexole for about 14 yrs for RLS and noticed some time ago my legs got worse. So no and then I would add another half. Then noticed it was getting worse. So four nights ago up all night I already knew it could get worse but also found some disturbing other factors about the drug. My cousin in USA did tell me he was on it for 10 yrs and it was a bad drug. He had augmentation, mine hasn't spread to other parts. I was still not sleeping the next night so I added calcium in an hour after pramipexole. It seemed to help.My schedule was pramipexole at 7 pm and sometimes added another half not always then before bed I take mysendol which is( 500 mlg paracetamol and codeine 9.75 and 5 mg of doxylamine. As I have always had problems sleeping and back pain . So I don't trust doctors to say one night on one off then off. So got some good advice from a lady here and others. I don't want to go onto any other drugs as I have very low salt and got to be careful what I take. Years ago doctor put me on Lexapro for anxiety and I ended up in the hospital he knew I had low salt anyway so my faith has gone with that. I started taking calcium about an hour after pramipexole and it helped .Much to my shock. I live in North Brisbane Queensland Australia.So wanting to get off this evil drug. I also get the stiffness told doctors this they didn't connect the dots. I also have fluid. I also take magnesium in late afternoon.I notice some people swear by iron tablets wouldn't know which one to take. Doctors here will not prescribe opioids here. And I don't want to take other drugs to come off a drug. So there you have it list of my meds when I take everything. But I want off.

[Joolsg]

Shumbah is in Brisbane and is prescribed Buprenorphine. So message her. She can refer you to a decent doctor who knows that opioids work for RLS and do not cause addiction or tolerance when used for RLS.Others have answered your post now.

I presume you are no longer on lexapro? All anti depressants cause RLS (except trazodone and wellbutrin).

[moggie8 in reply to Joolsg]

No it pushed my salt down too much. Then I had to wein off then they put me on another had to wein off. You normally should trust what the doctors advise you to do. No not on any anxiety meds now as I don't want to get on the drug train. I fixed my anxiety up myself. I'm hoping when I come off this the legs will settle a bit. So going on other drugs for me alot push my salt down. Had knee surgery gave me tramil salt came down to 114 ended up in hospital. I will message her tomorrow I guess I just push chat?

[Joolsg in reply to moggie8]

You click on Members. Find her name. Then click chat.

[SueJohnson]

You will have to take medicine for your RLS. It is not going to go away by itself.

Gabapentin or pregabalin are now the first line treatment for RLS. If they don't work then a low dose opioid will be needed. As Joolsg said you can get opioids in Australia.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin)

Most of the side effects 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)."

If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).

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 then you will need to take iron

If your ferritin is less than 100 take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

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...

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, 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.