Restless Leg Syndrome and Mirapex - Restless Legs Syn...

Restless Legs Syndrome

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Restless Leg Syndrome and Mirapex

GreenChilie profile image
22 Replies

Hello,

I have severe RLS. I have been taking Mirapex for about 3 years. It was a relief to find something that helped,! After trying natural remedies with no success, I went to a doctor about my RLS and was prescribed a medicine called Requip. I took Requip for several years, but it made be sick. My doctor at the time said, it shouldn’t make me sick. I kept taking it though because, it was better than not sleeping and having constant RLS that affected me even during the day. I changed doctors and then was prescribed Mirapex.

However, I started developing compulsive behaviors over the last few years, starting with eating and becoming obese for the first time in my life. Then came spending money, wanting to always go shopping and buying things I didn’t even need. I never thought about the medication Mirapex possibly being a cause. I have been confused about why I started developing problems with food and spending and why I haven’t been able to control them. , I have never had problems in the past stopping something if I wanted to.

A few days ago, after I suddenly developed another significant issue, I started researching to see if there is any correlation in what was happening or why I started developing addictions. I I found numerous articles that stated that the side effects of Mirapex can cause compulsive behaviors.

I also, read that Tramadol or Clonezapam (spelling?) may help with RLS. I realize they can be addictive and I would need to be cautious. The other drugs like Gabapentin, I tried, but the side effects were awful. I am considering stopping the Mirapex now and trying another medication, because of the problems I am experiencing.

Has anyone had similar experiences? Has any one had success with Tramadol or Clonezapam? Feedback greatly appreciated!

Thank you!

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22 Replies
ChrisColumbus profile image
ChrisColumbus

Welcome to the forum: it would be helpful if you could complete your profile to show which country you are in, your gender and age.

Please read this and replies - this refers to a UK TV programme, but the problems with dopamine agonists - pramipexole (Mirapex), ropinirole (Requip) and rotigotine (Neupro) are worldwide:

healthunlocked.com/rlsuk/po...

GreenChilie profile image
GreenChilie in reply to ChrisColumbus

Hi, I updated part of my information. I appreciate your feed back! I am 63 a female from the US.

ChrisColumbus profile image
ChrisColumbus

Besides ICD, dopamine agonists also eventually lead to augmentation for most:

rls-uk.org/augmentation-reb...

Look for guidance on how to come off dopamine agonists (very slowly!) from those who have been through it such as Joolsg and SueJohnson

GreenChilie profile image
GreenChilie in reply to ChrisColumbus

Hi, thank you for your feed back! yes my dosage has slowly increased over time.

SueJohnson profile image
SueJohnson

Welcome to the forum. You will find lots of help, support and understanding here.

Yes as Chris said you need to come off it.

First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.

To come off Mirapex 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.

Ropinirole and pramipexole (Mirapex) 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 it but they are not uptodate on the current treatment recommendations. (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 Mirapex 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)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.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 not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 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...

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.

And as Chris said it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.

GreenChilie profile image
GreenChilie in reply to SueJohnson

Wow! Thank you so much for all the information! I am already feeling hopeful! I updated my post with more detailed information. I also, included my age of 63, I am a female and reside in the US. I have tried gabapentin, but the side effects for me were horrible. I have also tried a lot of home remedies, without much success. However, I will revisit the magnesium and start taking gain as an titrate down. The dosage guidelines you gave are helpful! I will start immediately.

SueJohnson profile image
SueJohnson in reply to GreenChilie

You might want to try pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other.

Joolsg profile image
Joolsg

I've just posted about this, asking for anyone in the UK to contact me via 'chat'.Yes it's very common. Affecting up to 38%, which is why big pharma settled class actions for billions.

You should now sue the doctors who prescribed Pramipexole.

There have been hundreds of legal actions in the UK and the USA.

You now have no alternative but to get off Pramipexole, very slowly.

Reduce by half a 0.125mg pill every 2 weeks with the help of a low dose opioid.

You also need full iron panel blood tests and to raise your serum ferritin above 100ųg, preferably 200ųg/L via iron pills every other night or an infusion.

GreenChilie profile image
GreenChilie in reply to Joolsg

Thank you! I am relieved and hopeful now after reading the replies to my post. I appreciate the info on titration of the Mirapex. I’m not much on lawsuits, I just want to get my life back. I will also, have my iron checked . I am open to additional info that you might think of or suggestions !

Joolsg profile image
Joolsg in reply to GreenChilie

Join rls.org. Learn all you can because most doctors know zero about the disease.Look at Dr Andy Berkowski website at

relacs.org

Raising serum ferritin above 100ųg, preferably 200ųg/L resolves the majority of RLS, but often doesn't work if your dopamine receptors have been damaged by Mirapex, which is common.

Withdrawal is brutal and hellish, involving at least 2 weeks of very severe, all over RLS, and little to no sleep. But many of us have been through it.

You may need an opioid if pregabalin abd gabapentin do not work for you, so find a knowledgeable doctor via rls.org who knows about methadone and Buprenorphine and is willing to prescribe them if an iron infusion and /or pregabalin fail.

Good luck.

GreenChilie profile image
GreenChilie in reply to Joolsg

I just pray my dopamine receptors aren’t fried. Between the Mirapex and Requip, it has been about 9 years of taking them. After reading the information, I am determined, to stop taking the Mirapex. I currently have some tramadol, for pain from several back surgeries. So I’m lucky there. . I got off Cymbalta which I had been prescribed for pain. It had terrible withdrawal symptoms, so I will/can tough this out too! Information is powerful!

Joolsg profile image
Joolsg

I hope so too. Doctors need to stop prescribing DAs. Switching from one to another simply prolongs the suffering.

Wordsworth99 profile image
Wordsworth99

I wish you all the best GreenChilie! Nice name by the way 😊

Marzipana profile image
Marzipana

Welcome GreenChilie! You're certainly at the right place, among your people! I'm sorry for all of the bad side effects and suffering you're going through. You can do this tough change for yourself! I keep everyone with RLS in my prayers, for comfort, relief, and healing!

DicCarlson profile image
DicCarlson

Good luck! Excellent advice above!

Merny5 profile image
Merny5

Welcome to the group Greenchilie. I can relate to your story 100%. Many of us have been in your position. All of the information provided is perfect and on point. I may have missed it but how much are you taking? Wishing you the very best.

GreenChilie profile image
GreenChilie in reply to Merny5

Hi, I am taking 1.5 mg of Mirapex at bedtime. It is NOT extended release. I started out with 0.5 then 1 mg and Dec of 2022, the doctor increased the dosage to the 1.5.

Merny5 profile image
Merny5

Your dose is high. These dang doctors! Do you have a neurologist? The RLS foundation has a list of neurologists by state. My one piece I’d advise would be to reduce extremely slow. Take your time coming off of it ! If you feel that you are getting withdrawal symptoms, you may need to go back to the last dose and then reduce a week or two later. Keep in touch with the group. If you have concerns or questions, those on this forum can answer them. Good luck to you.

GreenChilie profile image
GreenChilie in reply to Merny5

Merny5, I appreciate your feedback and support! I have already started reducing my dose. I cut my dosage in half the first 2 nights, I did ok with that. The 3rd night, my RLS was horrible! Tonight I try cutting dose by 25%. 🤞🤞. I have an appointment with my Doctor on Friday to discuss me quitting the Mirapex and other possible options, since I can’t take gabapintin.

SueJohnson profile image
SueJohnson in reply to GreenChilie

Don't be in any hurry - let your symptoms be your guide as I mentioned above.

GreenChilie profile image
GreenChilie in reply to SueJohnson

Hi, Susan.

I saw my GP doctor a few days ago. I requested an iron panel and the results were…Iron 105…iron saturation % is 29… Ferritin 52…total iron binding capacity 361

We also discussed my titration of Mirapex dosage of 1.5. The doctor suggested REDUCING by .25 for a few weeks, then .50 for a few weeks, then .75, then 1.00, then 1.25

Since I can’t take gabapentin or Lyrica, I will start out trying tramadol to help me while reducing my dosage.

Any thoughts or guidance appreciated!

SueJohnson profile image
SueJohnson in reply to GreenChilie

Reducing at that rate is much too much. I strongly suggest you follow what I advised above.

Since you are just slightly above 100, you might want to try to being it up to 200 or more. 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.

You say you can't take lyrica. Have you tried it?

After you get off the Mirapex you don't want to stay on the tramadol as it is the only opioid that can result in augmentation. 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

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