My neurologist decided to take me off mirapex. This is a new neurologist since mine retired. She specializes in sleep problems. I also have sleep apnea. I dont know why she decided to take me off mirapex. When she told me I was in a state of shock. I also take oxycodone. She is taking me off one mirapex every week. I told her I was scared to do this. She said bite the bullet!! I asked her if I should have a stronger opiod. She said oxycodone is strong enough. I am almost done with my first week down one mirapex. Last night was really bad with the rls. The other nights were mild. I am concerned that every week when I go down another pill I will not be able to tolerate the rls. Once before many years ago I went off the mirapex and I had rls around the clock. It was a nightmare. I am afraid this may happen again. I don't mind going off mirapex if she has something else for me to take. What happens when I go off the mirapex completely. Dont know if I can do it. I have been taking mirapex for about 15 years. Any suggestions I can tell my dr. I'm really worried what will happen next week. My ferritin is 44. She said i dont need an iron infusion since my ferritin has gone up with the iron pills. From 29 to 44 in about a year. Also, she said to use my cpap machine and that should also help with the rls.
How to handle going off mirapex - Restless Legs Syn...
How to handle going off mirapex
Your doctor is taking you off mirapex too quickly as you discovered. I would first go back up to your original dose and let your RLS settle for one night. Then To come off sifrol, 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 or you may be able to reduce more quickly. 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.
Dopamine agonists like ropinirole and pramipexole (Sifrol) are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off sifrol although it won't be fully effective until you are off it for several weeks. 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 split the doses with 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. 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 don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
What iron tablets are you taking and how many mg?
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, 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, 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.
You ideally need an iron infusion with serum ferritin at 44, but the NHS won't agree so you may have to pay privately. Raising serum ferritin above 200ųg will help reduce withdrawals.It is good to get off Pramipexole now as it WILL cause severe worsening over time. Withdrawal is hellish and you cannot avoid at least 2 weeks of severe, constant RLS and little sleep. But, you will find your RLS is less severe once off Pramipexole.
Follow SueJohnson advice to reduce slowly.
As you already take oxycodone, you can use it at each dose reduction to settle the withdrawals.
Once off Pramipexole, you can take oxycodone. The average effective dose is 30mg, but some need 40mg. It's best to take it every 4 to 6 hours during the day to avoid mini opioid withdrawals.
My dr. was going to give me an iron infusion. But when blood work was done, she said the ferritin went from 29 to 44. So the iron pills must be working. So no infusion. What can you do during the 2 week period with severe rls. Isn't there anything that will help. I know what its like because I went off mirapex 14 yrs. ago. You cant live like that with rls around the clock. I will want to go back on mirapex...
Once off the mirapex, what happens then. Your rls don't miraculously go away, do they. What meds do you take then. I must have had every rls medication known to man. Ive had rls over 40 years. I have a vacation coming up. I cant afford to have rls around the clock when I am away.
Once completely off dopamine agonists, other meds will work. They won't work while you are still on.any dopamine agonist.As mentioned above, I am now completely RLS free, day and night, on 0.4mg Buprenorphine.
Dr Andy Berkowski did a recent study showing its effectiveness. So ask your neurologist.
I am now completely off mirapax as of yesterday. I am taking 3 oxycodone 5 mg. each. Doctor wants me to take one at 6:30 pm and 2 at 10:30 pm. I need to take one at noon to get me thru the day. The one at noon stops the rls for the afternoon. But the ones I take at night don't help. Its as if my legs are saying its nighttime, time to start the rls. My dr. decided to give me the iron infusion. I had my first infusion (venofer 200 mg) yesterday. I have to have 2 more infusions. I don't feel any different yet. When will I notice a difference? Soon I hope. I am calling my dr. today to ask her to give me a medication to replace the mirapax.
Iron infusions , if they work, can take up to 6 weeks. 40% do not respond.You only stopped Mirapex 11 days ago. Withdrawals can last months.
15mg oxycodone isn't enough to cover severe RLS. Average dose is 30mg, max dose is around 40mg.
Refer your doctor to the Mayo Clinic Algorithm and Dr Winkelman's opioid register, which set out average doses for RLS.
Oxycodone can cause mini opioid withdrawals. So best taken every 4 to 6 hours.
Or, speak to your doctor about a long half life opioid that will cover ALL day and night symptoms. Methadone or Buprenorphine.
If you can see a doctor recommended by rls.org, they will be willing to prescribe the average dose of oxycodone or switch you to Methadone/Buprenorphine. But do NOT take another dopamine agonist, as Augmentation will happen again very quickly.
I talked to my dr today. She wants me to take the 3 oxycodone tablets. One at 6 pm and two at 10::00. I told her I need one at 11 am. She said no they want to see how I respond to her treatment. I have sleep apnea so she has to be careful how much opiods she gives me. I am in such agony. No one can ever imagine what this is like unless you have had rls. I don't care if I have sleep apnea. I need something to help me today. She said she promises I'll be ok by my vacation on May 15. I dont believe it. I wonder what tricks she has up her sleeve!! Please forgive me for ranting. I am in such agony and there is nothing I can do. How many baths can one person take... These infusions had better help. Any other suggestions besides find a new dr....
Wait to start reducing until after your vacation.
Not everyone who comes off a dopamine agonist has terrible withdrawals although it's probably wise to plan for it. If you reduce slowly as Sue has suggested then it is more likely to be easier. I suspect last time you went off it, it may have been more sudden which is the worst way. Additionally if you are not augmenting i.e. getting RLS symptoms during the day and in arms and upper body as well as legs then your withdrawal may not be so bad. Finally oxycodone is an opioid and will normally help with RLS and may make the final stages easier. Remember that at any stage you can pause the reductions of the dopamine agonist to see if it becomes easier or give yourself a break so you are in control and can take it steadily and at a pace you can manage.
Mirapex WILL make your RLS unbearable. Experts are now agreed on that. As you were on it for 14 years and now on it again, augmentation is inevitable. So it's better to get off it while you can survive the brutal 2 weeks withdrawal.A few people have reported that they avoided the withdrawals by starting Buprenorphine while reducing Pramipexole. Perhaps your doctor will agree to prescribe it. It comes in 2mg pills in the USA, but you can use a pill cutter and start on 0.5mg.
I take 0.4mg Buprenorphine and have zero RLS night or day. In the UK, we have smaller pills, starting at 0.2mg.
So, with the correct treatment, once off Pramipexole, you can be RLS free.
Raising serum ferritin above 200ųg/L by oral supplements can take months/years which is why an infusion is more effective.
I don't think that I can say anything better than SueJohnson (below), except to say that it took me 6 months to wean off of Mirapex, but I did it. I took it for nearly 22 years, and I was terrified, but determined. I read all the articles about why Mirapex is a 'timebomb', and I was convinced that it was the right thing to do! I think your physician should have been more tactful than saying "bite the bullet", but she is right. It is a tough drug to get off of, but it can be done. Be patient with yourself, and take your time. But do it. I have been off since January 9 2024, and I haven't looked back. I now take pregabalin, and feel much much better. Know that you are not alone, you can do it. I think it's safe to say that we are cheering for you.
Thank you all for your help. I am scared to death. This week I go off my second mirapax. I am still taking the oxycodone 3 a day. She wanted me to cut one out but I won't do that. We'll see what happens. I have a vacation coming up in a couple of weeks. I have to be okay for that. I'm praying like crazy!!!!
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