mirapexin

[Oxviewjill]

Hello all. I have had restless legs syndrome for years and my mother had it too. I started staking Mirapexin 5 years ago. It brought great relief but I started to gain weight as in not being able to control what I eat and also impulse buying. My consultant said to come off mirapexin and try gabapentin. So I’m now in 1200 mg of gabapentin and it doesn’t seem to help at all. I’m now reducing the mirapexin and my symptoms are so bad. Day and night and am despairing on what to do next. Will this improve and what if anything will help me. Thank you

[Oxviewjill]

No im not on either of those.

[ChrisColumbus]

Yes, as per the replies to the post that DesertOasis has linked to, you have augmented on pramipexole (Mirapexin) and gabapentin will not help until you come off the dopamine agonist very slowly. You should certainly look at your ferritin levels and you may need a low dose opioid: follow the advice given by Sue and Jools in their replies to Mittons.

[SueJohnson]

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

To come off mirapexin 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 mirapexin (pramipexole) 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.

The beginning dose is usually 300 mg gabapentin. Normally one would start it 3 weeks before you are off mirapexin although it won't be fully effective until you are off it for several weeks. After you are off mirapexin for several weeks you may find the 1200 mg of gabapentin fully controls your symptoms. If not increase it by 100 mg 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.

If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin 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 . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

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...

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.

[Oxviewjill in reply to SueJohnson]

I’m on raporsin and amlidipone for blood pressure. And arcoxia for stiffness.

[SueJohnson in reply to Oxviewjill]

Amlodipine is a calcium channel blocker. It makes RLS worse for some but not all. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....

Arcoxia and raporsin are OK.

[Oxviewjill in reply to SueJohnson]

Thank you so much for your advice. I will take this up with my doctor.

[Joolsg]

I agree with SueJohnson. Follow her advice.Until you're completely off Mirapex, gabapentin won't help at all. I wish doctors would explain this to patients ( but they probably don't know!).

Also, you have should see a lawyer about legal action for ICD. Here in the UK there have been hundreds of successful claims against doctors for failure to warn of the very high rates of ICD. But you have to start legal action within 3 years of realising mirapex caused the ICD. Maybe the time limit to bring action is longer in Ireland.

Unless we all sue and force the medical profession to stop prescribing mirapex and Ropinirole, they'll keep treating us poorly.

[Joolsg]

No. Often we get posters who take some time to reply, or alternatively are a little overwhelmed by the information

[Oxviewjill]

Sorry for the slow reply. Thank you so much to everyone for all the advice. I wish I had know that mirapexin was so bad and so hard to get off. I was literally up all last night with awful symptoms. Couldn’t stop moving! I was so exhausted today. But I obviously have to get off this drug. I am on blood pressure tablets and I take magnesium. Thanks again to you all

[Restylegs]

I've been on sifrol for yrs and tried to come off several times. Been on all the known drugs from anti smoking to 300mg of codine a day , enough magnesium i thought id dissolve in the shower but always end up back on the old sifrol it's the only thing that really works , but everyones symptoms are different and now I just keep taking the pills it's not worth fighting it. And the wife is much happier im not a grump and up all night . take care

[Oxviewjill in reply to Restylegs]

It’s so hard and at least it works for you but the mirapexin has started to not work so well for me and now I have to find something else. It’s hard to imagine the distress it causes or explain to someone how bad it is. I was so glad to find this site as it has given me some hope. It’s good that you are not a grump and up all night 😊

[Restylegs in reply to Oxviewjill]

If you manage to get off it you did a lot better than me , I've been on it for yrs I'll probably be on it for ever. Anyway good luck👍

[Oxviewjill in reply to Restylegs]

Thank you. I hope I have the courage to keep going!

[Restylegs]

I'm just on sifrol at the mo , and the usual blood pressure and metformin. I have done , snri , bupropion, lyrica, gabapentin, and the old fav codine , but sifrol is the winner in the end 😀

[Restylegs]

Metformin 500mg twice a day must be coming up to 3yrs , RLS 5ish yrs and sifrol has to be 4yrs with codine whenever I need it which isn't that often, I've started cycling about 4mths after I tried to get off the sifrol the last time when I couldn't sleep I would just burn it off till my legs ached that actually worked to some degree, but I think once u have u have it for life , my wife says I'm a Muppet for trying to stop taking it as it works but I read all the stories about how bad people get on it

[Restylegs]

Yes that was one of the first drugs i was put on I had a bad time on snri and came off after a month , the metformin keeps my sugar at the right level which is handy. I think when they come out with a new drug for RLS I might give it a try , but until then sfrol and lyrica are probably the best they can do

[Restylegs]

I have augmented twice now the last was about 4mths ago when the sifrol stopped working , the time before that the doc just up my dose to .5 So this time I thought sod it I'll wean myself off over a couple of months and try and stop , it wasn't until I stopped altogether I realised how bad it was even with codine , 3 sleepless nights of pacing and wandering around on my bike and boom I was back on it , and it now works ok I can sleep I get about 4hrs or so of solid sleep which I'm happy about beats zero

[Restylegs]

That is a very technical ans I will copy it and keep for future ref I will give it a go next time the sifrol gives up and I decide to come off again

Many thanks for that information 👍

[LotteM in reply to Restylegs]

Please be aware, Restylegs, that the remarks “one of the best drugs for RLS” and “what we need..etc” this is the personal opinion of DesertOasis and based only on her own reasoning, which I strongly suspect has some flaws due to too many simplifications about the working and activation of neurotransmitter receptors.

[Restylegs in reply to LotteM]

I think most of or all the comments inc my own are based on ur own personal 'what works and what dosent work for me' , if sifrol works then that's good enough , most of us listen to our own bodies anyway , sifrol has its place somewhere it's not for everybody 👍

[LotteM]

I wrote what was only your words: “one of the best drugs for RLS - Metformin”. There is not one peer-reviewed paper on that. The same with that we (=people with RLS) need dopamine agonists.

Oh, and I am not an 80-year old scientist.

[LotteM]

That article is not a test in any way of the effectiveness of Metformin as a treatment for RLS. It is a very long stretch from that article to “one of the best drugs for RLS”. Of course, following your reasoning, you can come up with an hypothesis. But hypotheses need testing. Circumstantial evidence may help. Eg, if dopamine antagonists upregulate dopamine receptors (btw there are many and in many places), then many antidepressants should also do that. And thus - in the long run, according to your reasoning as I understand it - also upregulate dopamine receptors, and thus - again according to your reasoning - be a treatment for RLS? I don’t have my hopes up. But, hey, that’s me.

Your out-of-the-box thinking is great. But sometimes I am concerned as it sometimes seems you present your ideas as something like known facts or commonly accepted views. And I am concerned readers of this forum sometimes trust our posts more than their medical doctors. That is just it, concern.

[HurricaneHenry]

Requip has been the only thing to help me

[HurricaneHenry]

Requip has been the thing to help me.