purpleflowers

[purple-flowers]

I am taking 900mg of Gabapentin and 2 x .088 Pramipexole. My neurologist has not said anything about coming off of the Pramipexole. Should I come off if it myself. Obviously, I would go down to 1 x .088 and then two weeks later stop it altogether. Should I do this?

[LotteM]

Go far more slowly, and with smaller amounts. Depends also on whether you have signs of augmentation, and how long you have taken the pramipexole.

Read the many posts and replies about DAs and augmentation and you can design a plan that suits you. We are here if you need more specific advice or simply for support. Many of us 'have been there', and we understand.

[SueJohnson]

To come off pramipexole reduce by half of a .088 mg 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.

[purple-flowers in reply to SueJohnson]

thankyou so much. You are so helpful!

[SueJohnson]

I remember you were waiting on your ferritin results. Did you ever get them. If so what was your ferritin?

[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, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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.

[purple-flowers in reply to SueJohnson]

I have asked any times but don’t get a reply so I assume it must have been ok. Am having an NHS ferritin test on 6th November so hopefully I will get an answer but I won’t hold my breath!

[SueJohnson in reply to purple-flowers]

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. Be insistent if needed as you have a right to know. 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 your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

[purple-flowers in reply to SueJohnson]

Thankyou for all your advice. It is much appreciated.

[purple-flowers in reply to SueJohnson]

Serum ferritin test was 38. Is this okay?

[SueJohnson in reply to purple-flowers]

No. It needs top be 100 or more. Since it is so low, ask for an iron infusion as that will more quickly bring it up as that will help with your reduction of pramipexole. If you can't get it, take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every day at the same time so it is at least 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours, 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 tumeric 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 or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

[purple-flowers in reply to SueJohnson]

just emailed professor walker. Hopefully I will get a reply!

[SueJohnson in reply to SueJohnson]

Since I advised you on taking iron every day I did more research and discovered I was wrong. One absorbs more iron in alternate day iron than taking it every day. Https://thelancet.com/journals/lanh...

[purple-flowers in reply to SueJohnson]

Yes I was told this by my neurologist. Thankyou for contacting me!

[Cowbsky]

Hi, purple-flowers

_I have been e-mailed by the this site, asking to say something concerning Pramipexole. Actually, some 4 years ago , Doctor put me on this medication. I tried for just some 5 days. Hate it! Kind strange things happened: it stopped legs, indeed, but kept me somewhat stranding between sleep and awake ( I could see this on my breathing parameters, coming from my BIPAP);

_ then Doctor, put on Pregabalin. Hate it , likewise, due to side effects;

__ then Doctor suggested me back Clonazepam, which I love, maximum dose 0.5 mg, which works marvelous for me, no side effects. Sometimes I discontinue it (it takes some 1 month to do so);

_ so, since some three years ago I am doing rather well with my Restless Legs (severe since some 7 years old; now 71), by using 0.4 mg of Clonazepam + EFT + sleeping on two phases (some midnight to 4:00 am, interval of some 90 minutes, reserved for EFT, meditation, and back to sleep for some three more hours - the best ones ).

_ I found out that, as well per my Doctor experience, quite often Restless Legs tend to get lower at about 4;00hs more or less (also, this it would be kind of universal "magical hour" to meditate and so on);

_ also, at this moment I am experiencing Lamotrigine (50 mg, bed time), trying to see whether it is help with PSTD (very often interrupting my REM stages);

all the best