augmentation with Mirapex (pramipexole)

[wendersgame]

Hi all,

I'm new here and have had RLS one form or another since I was a child but lately it has kicked off particularly badly.

To give some insight I have night terrors and I had a sleep study which suggested RLS might be triggering the terrors (my legs wake me when I should be asleep). My dr at the time suggested I get my ferritin checked. Between one thing an another (health scare and chemo) I waited 6 years to test the ferritin when RLS was very noticable in my life (2.30am wake ups). My ferritin was 24 so I immediately off my own back started iron and vitamin c

I got my ferritin up to 48 in 3 months, then 78 in another 3 months and that's the highest it's been. I went to my GP recently about general issues with sleeping and mood and she prescibed me HRT and then Mirapex (pramipexole). It seems to work with the odd breakthrough night and I still sometimes get night terrors regardless.

I'm noticing people talking about augmentation and that (if I understand correctly) is not something I want - I'm wondering if I should just stop this nonsense now with the pramipexole and either go it alone with the iron tablets, or what I should do. I certainly don't want something that'll eventually make everything far worse than it is as I sleep awfully anyway.

If anyone has thoughts, I'd like to hear them as I'm only 3 months on this drug and if it's best to stop now rather than risk worse RLS then I'd consider it.

Thanks so much,

Wendy

[SueJohnson]

Pramipexole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. Up to 70% of patients will suffer from augmentation which believe me you don't want. It 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. To come off pramipexole, reduce by .125 mg (equivalent to .088 tablets) 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. But in the long run, you will be glad you came off it. On the gabapentin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off pramipexole 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. 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 divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin) daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin.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...

[wendersgame in reply to SueJohnson]

wow thank you so much for the really detailed reply. You have summed up my fear. When I saw my GP she didn't know what to prescribe so asked another Dr who told her to prescribe this. I initially was on it for a month, and when I asked her about the safety and asked her my concerns about it - she told me there was nothing to be concerned about, however I was (and am) aware that she also hadn't heard of the drug being used for RLS a month prior. I've been feeling I need a second opinion on this and I think I'll seek it from another GP.

i appreciate your response, it tells me I need to stop this now. I'm luckily only on the lowest dose of 0.88mg so it shouldn't be too hard I assume to come off

[SueJohnson]

On your ferritin, which you want to be 100 or more, if iron tablets aren't able to raise it above 78, you may need an iron infusion since iron isn't absorbed as well above 75. If you have one, wait 8 weeks to check your ferritin. Otherwise you probably know this but in case you don't, if you continue to take iron tablets, be sure to take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron.

[Joolsg]

I agree with Sue. Sadly most doctors are not taught RLS at university or during training so they have no idea of the link to low iron or that Pramipexole and Ropinirole are no longer first line treatment because of the VERY high risk of severe worsening of RLS. The drugs 'pour gasoline on the fire'.

I would stop now and get your ferritin above 100. If raising ferritin to 78 caused such an improvement in your RLS that you only got the odd breakthrough night, raising it above 100, preferably 200 will probably resolve it completely.

Sorry to hear about the night terrors. If anyone suggests anti depressants as treatment, avoid. Anti depressants and sedating anti histamines trigger or worsen RLS.

The occasional diazepam may help the terrors and is RLS safe.

[wendersgame]

thanks guys - I thought I'd replied to this earlier from my phone but it doesn't seem to be here, so I'm going to go again! So initially when I asked for my ferritin to be checked I got questioned as to why - they said it was a strange thing to ask for. I would get it every time I'm asked. When it was 24 they automatically said iron tablets, but then more recently when it was 78 and I'd been going through a patch of RLS, they said the levels were in normal range and had nothing to suggest. They don't make the link between the ferritin and the restless legs and they dont' really understand how to help.

I'm going to make a concerted effort to keep up the iron and see how well I get on with it and if the ferritin can come up above 100. In the meantime I'm going to stop the pramipexole and keep up with the magnesium and iron and see how I go for a while. if it gets worse I'm going to see a different GP about it.

out of interest, how is everyone's haemoglobin count? My Hb was 13 when last checked yet my ferritin low. it's nearly always the same - never an issue with Hb. I asked a nurse about it one day taking my blood and she said if the ferritin is low, the Hb will fall after, but my ferritin is constantly low and my Hb not - I'm confused... is anyone else the same as me with their regular iron count?

[DataRN]

If you are going to continue oral iron, you may want to consider changing to Heme-iron. It is easier on your digestive system and our bodies absorb it much easier than what you state you are taking. This is a helpful video about heme vs non-heme iron. youtu.be/OSE5PB0gbqA(Not working as expected?)

[wendersgame in reply to DataRN]

Thanks so much for the video. An Interesting watch. I will see what supplements are available to me here that are haem iron ans will give rhat a go. I'm getting bloods taken Tues to see what my Ferritin is (I've been supplementing) and go from there. This GP seems on board with coming off Pramipexole (which i am) and sorting my Ferritin levels.