Withdrawal from Mirapexin.

[keiralee]

I had got my Mirapexin down to 1/4 of a tab and stopped taking it Friday. I was on a low dose, 0.26 mg fir 6 yrs. The 3 days since then have been a nightmare. I cannot sit or stand just have to walk. Have some respite in the mornings. I am taking Tramadol. Should I re introduce the 1/4 tab until I can get something to take the place of Mirapexin. Or is this a backward step.

[SueJohnson]

Definitely a backward step. You are suffering from the withdrawal and will for several weeks and then it will at least lessen. Can you increase your tramadol?

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and 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.

[keiralee in reply to SueJohnson]

I have just had my blood test results and Ferritin is 75.2TSAT 30%

Do you think I need to contact the hospital I am under. Thanks

[SueJohnson in reply to keiralee]

If you can get an iron infusion that would be great but at 75.2 I doubt you will be able to get it, If not If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness.of the blood thinners and of the iron so check with your doctor. Otherwise, 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. 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 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 to slowly raise your ferritin. Ask for a new blood test after 3 months. If you get an iron infusion ask for a new test after 8 weeks.

[SueJohnson]

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, oestrogen (estrogen) 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, C, 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

[keiralee in reply to SueJohnson]

Thank you Sue for taking all this trouble. I actually had my bloods checked last week and have to phone tomorrow for the results. I take bp meds and have checked these out in the past and they are fine. I have just bought a magnesium spray.

Thanks again

[Joolsg]

This is absolutely NORMAL withdrawal.The first 4 or 5 days after last pill you will have 24%7 severe RLS and violent leg jerks. No sleep or rest.

You will think you are dying.

But stick with it.

Sleep / rest in the mornings.

The tramadol will help.

After 2 weeks, the RLS should settle.

You can either stay on tramadol or switch to gabapentin/pregabalin.

[keiralee in reply to Joolsg]

Thank you Jools, I feel more hopeful now

[Joolsg in reply to keiralee]

Most of us have been in your position keiralee and remember it vividly.I definitely had PTSD for a year afterwards. I couldn't sleep in the dark and needed the light on.

But, as my RLS improved and I began to sleep more, the trauma faded.

There are a few people who don't have a very severe withdrawal, but most will have a terrible few weeks.

But, every day off dopamine agonists will improve your RLS and allow your dopamine receptors to settle and repair.

Stay strong.

If you can get medical cannabis, it will help reduce the RLS for around 30 mins and allow you to sleep/rest a little.

Clear your diary because you won't be able to work or socialise for the 3 to 4 weeks after the last dose of Mirapex.

And ask a friend or family member to stay up with you for the first few nights, as falls from exhaustion are common.

[keiralee in reply to Joolsg]

Hi , I am really struggling. This is day 9 of stopping mirapexin. There is no let up. I have to keep walking, cannot stand still. Virtually no sleep I am beyond exhausted. My tramadol slow release and I have been taking 3x 100mg spaced out. I really don't think they help. I feel shaky , have no appetite. This is pure he'll. Imy gp is useless even if I could see him.

Is this how it is ?

[Joolsg in reply to keiralee]

Sadly yes.Your GP should have started you on pregabalin or gabapentin as they are now first line med treatment amongst experts. Has he discussed replacement meds?

It took around a month to 6 weeks for my withdrawal to settle enough to get 3 or 4 hours sleep.

It then took me 5 years to find a med that stopped all my RLS. But getting Buprenorphine in certain areas of the UK is extremely difficult.

Take a video to show the GP so they realise the hell of withdrawal, and hopefully STOP prescribing these dangerous drugs.

[keiralee in reply to Joolsg]

If you see my previous posts I was on Pregabalin and Gabapentin 6 years ago after coming off Mirapexin the first time. It made me very ill. My then gp sent to the neuro hospital in London who put me straight back on Mirapexin low dose and it worked for 6 years. The same neurological hospital has written to my gp telling him I have to wan off tramadol and then he can start 5mg oxycodone. He can't see me for 4 weeks. My Dr has no clue about rls. I have now made an appointment with Prof Bucheri assistant on weds but I don't know how I will cope to then. The tramadol is er, do you think that is helpful. Or is there anything else I could take. Can I take cocodamil etc whilst I have tramadol in my system ?

[Joolsg in reply to keiralee]

Sorry, I forgot pregabalin made you ill.You should be prescribed a long half life opioid, like methadone or Buprenorphine.

I took tramadol 50mg every 4 hours during the 2 to 3 weeks post Ropinirole. It didn't help much

You would be better sticking to ONE opioid.

Withdrawal is hell for at least a month, so what you are experiencing is not unusual.

It will start to improve with each day. Slowly, but surely.

I do hope you get a decent consultation on Wednesday. Don't let them prescribe the Neupro patch. That very quickly causes augmentation again.

[keiralee in reply to Joolsg]

Thank you joolsg

[keiralee in reply to Joolsg]

Hi Joolsg, I took my last 1/4 Mirapexin 7 days ago and I have to say the rls appears worse now. Very little respite, virtually no sleep last night. I have to keep moving all the time, no standing just walking. I am exhausted. I don't think the tramadol is helping just makes me feel nauseous. Is this normal ?

[Joolsg in reply to keiralee]

Perfectly normal. I didn't sleep or get any rest for 4 days. I fell over badly 3 times.It takes at least 2 weeks for the dopamine receptors to settle.

The first month is hell.

As your ferritin is just over 75ųg, the Mayo recommends an iron infusion, as it is difficult to raise levels between 75-100ųg.

An iron infusion may well improve your RLS.

[SteveSpectra]

Hi Keiralee,

I would listen to the advice that Sue has given. I'm not in a position to advise anyone about what drugs they should take but I can tell you how I started on Tramadol and that it really does (did) help me. About ten years ago I had an appointment to see a neurologist regarding the worsening of my RLS. I was losing a lot of time at work due to lack of sleep. I didn't know it then but it was probably the start of Ropinirole augmentation as I had been on it then for about 14 years. Two weeks prior to this visit I had had surgery (non related) and was prescribed 2 x Tramadol 250mg four times daily to help with pain relief. During these two weeks prior to the neurologist appointment I never had one instance of RLS. It was absolute heaven... The first time in years I had gone a whole week without an attack. When I mentioned this to the neurologist he just said "Simple, just keep taking the Tramadol". I told him that I did not want to be on such a high dose of a drug with a high tendency for addiction, so he said take two in the morning and two at night. Which I have been on ever since. It obviously stopped helping as much as in the last year my RLS has got worse and worse. To the point where I found this forum and wrote what I was going through after coming off Ropinirole and changing to Pramipexole. But that's another story.

If you can try taking Tramadol and it helps, at least initially, well and good.

[keiralee in reply to SteveSpectra]

Thank you for replying, Steve. Good luck.