Should I be worried? pramipexole pres... - Restless Legs Syn...

Restless Legs Syndrome

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Should I be worried? pramipexole prescribed

Ani246 profile image
22 Replies

I've had RLS for years but it's been getting worse as I'm getting older, I'm 54. I tried iron supplements for a while (not through medical advice) but this didn't seem to help and I also have to be careful as I take various other medications for an immune disorder. A week ago I was given pramipexole via an over-the-phone GP consultation. I've got Glepark 0.088mg and told to take 1 per day late evening. So far it hasn't seemed to help completely but I have slept better, maybe too much! My legs are still a bit rubbish but I feel so dozy , and I have a really busy job! Anyway, reading here has made me wonder if I should just stop the pramipexole before it becomes too hard to stop. Also I like to go out at weekend and have a drink or too, is this still ok to do? Any advice is welcome but I will really struggle to get any medical help as it took me months to get the phone consultation with the GP. The GP wants to review in a month and has just given me 30 days supply but it could take me weeks to actually get a phone appointment, because of work I'm limited to Mondays and if you don't get through by 8.15am you've no chance. Sorry for rambling, I've been plagued with this thing for far too long!

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Ani246 profile image
Ani246
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22 Replies
Elffindoe profile image
Elffindoe

Oh dear!

I'm not a doctor so cannot tell you what drugs to take or not to take.

However, what I can tell you is that pramipexole is no longer recommended as the first treatment for RLS.

In addition, as you seem to know, it can be very diffcult to withdraw from pramipexole and this is because it causes dependency, quite quickly.

Hence, this might seem extreme, but I suggest you STOP the pramipexole now.

It seems that your doctor may have failed you in several respects.

1) by prescribing a first medicine that is no longer prescribed

2) by possibly failing to mention akternatives which both ethically and kegally he/she is supposed to do.

3) by apparently failing to warn you of the complucations of taking pramipexole. Another ethical/legal requirement.

Please don't tell your GP this, it won't help matters!

The meds now recommended for the first treatment of RLS are either gabapentin or pregabalin.

This is because of tge major complications associated with dopamine agonists, pramipexole, ropinirole or rotigotine. These are Impulse Control Disorder and augmentation.

I suspect your GP is simply not aware of this.

However, this link might inform him/her.

pubmed.ncbi.nlm.nih.gov/274...

You could also ask your GP for blood tests for serum iron, transferrin saturation and ferritin.

It is recommended that if ferritin is below 75 then start an oral iron supplement with the aim of increasing ferritin to at least 100.

NOTE being told ferritin is "normal' is insufficient, this could be under 50.

I see you've tried iron with no apparent effect. This may be because it isn't known to be 100% effective, 60% at most.

The other thing is that it may take several months to have any effect. So you must take it at least 6 months then have another blood test.

You should also look into aggravating factors.

It may be that your GP may not be aware of what I've written. Please don't quote me!

However do refer him/her to the link above and to the links below

uptodate.com/contents/manag...

cks.nice.org.uk/topics/rest...

It is is only my suggestion but based on the information in tbe links my suggestions are

1) stop the pramipexole, this is your choice

2) ask for gabapentin or pregabalin

3) ask for blood tests for iron levels

4) if ferritin less than 75 start oral iron.

Joolsg profile image
Joolsg

I agree with the excellent advice Elffindoe has given you.The GP should have taken bloods before prescribing Pramipexole and warned you of Impulse Control Disorder, Augmentation and possible pyschosis. There has been a successful legal case in the UK on this matter.Raising serum ferritin above 100, preferably 250 resolves RLS in the majority of cases so that should be the first thing your GP tries before prescribing meds. The problem is that RLS isn't taught to doctors in the UK so they are unaware of the link with low brain iron.

I agree with Elffindoe, stop the Pramipexole now and see if you can get an iv iron infusion to raise ferritin and iron levels faster. If raising levels and checking you're not on meds that trigger RLS doesn't resolve your RLS, then consider pregabalin. Mayo Clinic Algorithm attached. This is the latest advice from the top experts in the US. The UK is about a decade behind on RLS research and knowledge.

mayoclinicproceedings.org/a...

tagaxel profile image
tagaxel in reply to Joolsg

Wow! I didn't know about the psychosis business! I'm goinng through a hell of the withdrawal period right now after my second reduction from pramipexole.

Joolsg profile image
Joolsg in reply to tagaxel

I didn't either until I started to research whether there had been any successful legal cases in the UK against doctors/ drug companies relating to dopamine agonists. I knew about ICD and augmentation. The neurologist had to pay damages for failing to warn about the many dangers of Ropinirole. The poor woman developed psychosis.

bmj.com/content/364/bmj.l434

I feel for you. I know how horrendous withdrawal from these drugs is.

Have you been given anything to help? I hope you get through it safely.

tagaxel profile image
tagaxel in reply to Joolsg

I can't take opioids because I take an MAOI (could kill me). I am going to explore doing what is called a micro taper. You disolve the Mirapex pill in X amount of water and take out very samll amounts each night - like thousands of a mg or even tens of thousands. The technique is use on benzos and other psych drugs.

Elffindoe profile image
Elffindoe in reply to tagaxel

Hi sorry to hear you're having difficulty with withdrawing from pramipexole.

The main thing is to reduce the dose slowly, so I'm not sure that you're doing this.

The usual way is to reduce the dose by about 44ug once every two weeks.

Taking thousandths of mg doesn't sound right!

The way it's normally is to use 88ug tablets and reduce the dose by half a tablet. This way all you have to do is cut them in half.

You may know the 88ug tablet as 0.088mg or 0.125mg - same thing.

I didn't know pramipexole was soluble in water but I guess you can do the same thing by dissolving them,

I've not heard of anybody taking MAOIs for many years. Does it work?

PS unfortunately horizant isn't available in the UK.

tagaxel profile image
tagaxel in reply to Elffindoe

Thanks, the MAOI is the only thing that controls my recurrent depression.

Elffindoe profile image
Elffindoe in reply to tagaxel

It's good it works.

Does it make your RLS worse like other ADs?

tagaxel profile image
tagaxel in reply to Elffindoe

No - RLS have been with me for 20 years - only got out of control when I augmented on Mirapex.

Elffindoe profile image
Elffindoe in reply to tagaxel

Great, perhaps if it weren't for all the restrictions, an MAOI might be an option for somebody with RLS.

What do you think?

tagaxel profile image
tagaxel in reply to Elffindoe

The food restrictions are nowhere near as bad as the articles say they are but there over 300 drugs that are counter indicated and it makes you impotent! I would recommend MAO a only as a last resort.

Elffindoe profile image
Elffindoe in reply to tagaxel

Hence why you don't hear about them much these days.

I am a prostate surgery survivor, wouldn't suit me.

Joolsg profile image
Joolsg in reply to tagaxel

I used cannabis during the worst nights & it was the only thing that helped. It gave me 30 mins sleep after 4 days of zero rest.Micro dosing sounds like a good plan.

tagaxel profile image
tagaxel in reply to Joolsg

This is the 12th day of pure hell and it's only after my second reduction. I'm one of the very few people who have what is called a paradoxical effect to cannabis so I can even take that. I don't know how I have managed to last this long.

Joolsg profile image
Joolsg in reply to tagaxel

Oh no. Stay strong. How long have you been taking MAOIs? I know they're older type anti depressants. As most anti depressants trigger or worsen RLS, could you transfer to one of the safe alternatives like wellbutrin, trazodone, lamotrigine, depakote or carbamazepine? I knoe you can safely take opioids and cannabis with these and they don't worsen RLS.Wishing you strength. It will reach a plateau. You will need to discuss replacement meds and start them around 4 to 5 weeks before the last dose of Pramipexole.

tagaxel profile image
tagaxel in reply to Joolsg

Thanks, Joolsg. They tried all of the other antidepressants but only Nardil works on my type of depression which is called “reoccurring”. I have stayed on a prophylactic dose of it for 25 years after having tried all the other antidepressants because every time I went off, I ended up back in some psych hospital.

Ani246 profile image
Ani246 in reply to tagaxel

Wow! It sounds awful. I'm so glad that I asked advice on here before it got beyond a week of taking pramipexole. I really hope you find something that helps tagaxel.

Ani246 profile image
Ani246

Thank you for the advice. I really appreciate it.

At the moment I can't get a gp appointment in person so it's difficult to discuss anything with them, but I'm glad I asked here as I did get really concerned when I read more about pramipexole. At first I was just so relieved that a gp had actually listened to me but now I feel too worried to continue taking them. As I've only been on them for a week I'll stop now before it gets too difficult and I'll try to get another phone consultation and ask about the ferritin test. Obviously I don't want restless legs but I don't want to add further problems as I have enough other stuff to deal with.

Just out of curiosity, can fluoxetine make rls worse?

Joolsg profile image
Joolsg in reply to Ani246

Yes. All anti depressants ( except about 4 in the UK) trigger or worsen RLS. Doctors should know this as serotonin reduces dopamine and reduced dopamine triggers RLS.Safe alternatives in the UK are trazodone, lamotrigine, depakote, and carbamazepine. If you're taking fluoxetine for depression, talk through alternatives with your GP. If you're taking it for anxiety, some of the meds for RLS also can help anxiety - pregabalin and gabapentin.

Other meds that worsen RLS are sedating anti histamines, statins, beta blockers and PPIs. Also cough and cold meds contain a sedative that triggers RLS.

in reply to Ani246

Wow, Ani, we really know nothing about you. May I ask what are your other conditions and any recent surgeries? Can you please tell us all of your medications right down to things like Melatonin and other supplements? I'll tell you a little about me, I have a new golden rule, "do unto others as if they were you."

With that said, let me start by saying I have done very little research into drugs for RLS, but have spent the last 15 years casually, but intensely, reading about the condition itself. That all changed about four weeks ago. Now, after a full four weeks, I'm an expert on the drugs that have been recommended to you. I don't like any of them, I mean I can't stand them and feel you should only start on them if the big knives in your kitchen are calling to you. If someone was holding a gun to my head and was forcing me to come up with two I would say buprenorphine and neupro. The bup is a "partial" mu agonist and neupro is a "partial" dopamine agonist. "Partial' seems to still be effective yet augmentation and withdrawal not as frequent and not as bad. Each appear to be the superior drug in their class - to me. Still don't want you on them. Nor can I stand Lyrica and forced to choose I would say Gabapentin. I suggest you take a deep dive research trip into these drugs before you discuss with a physician. If you don't want to take a deep dive and truly are desperate then Jools and Elfin are world-famous resources in this regard.

RLS, in general, and simple terms, means genetically lousy D2/D3 receptors, leading to a lousy dopamine transport system. Plus (like that isn't enough), we have low to no brain iron because of other factors regarding our brain's acquisition and storage capabilities. Iron is important in maintaining the dopamine transport system and its functioning. VERY IMPORTANT... for all humans.

So if the knives aren't speaking to you then take a ride on the "I'm going to build up my dopamine transport system even if it kills me" train. Some members on here have had good success with nightly fasting and eliminating certain foods (food groups) like dairy, sugar, gluten, caffeine, alcohol and anything you are sensitive to. No cheating! Nightly fasting means getting most of your calories during daylight and then no food for that long night time phase which can be anywhere from 12 to 16 hours depending on how gung-ho you are. If you research it you will see that scientists have found that severe calorie restriction (mostly in obese rats) really does upregulate the D2 receptors. But other doctors and researchers have found the most benefit comes from timing our food in accordance with our ancestors' lifestyle. Did cavemen have a double dip at 1am? There are other activities and substances that allegedly stand the chance of up-regulating our receptors such as anaerobic exercise and the uridine stack. I'm sure there are others, I just haven't found them.

There are two lovely gentlemen on here (Madlegs and Eryl) that have two other golden rules. Madlegs has taught us that if you want to keep your RLS at bay then look for, and avoid, "triggers." Avoiding triggers is the ultimate way to avoiding RLS. RLS is, after all, probably nothing more than a genetic predisposition and then environmental triggers. I was reading recently about one of the last remaining tribes of people that live in a pre-historic manner. The tribe's name is Hazda, located in eastern Africa. Read about them, it's fascinating. They don't have any of our western diseases. Worms and parasites yes, but no metabolic syndrome. If we live more like them (thus avoiding most if not all of those Madlegs "triggers") maybe we can improve our RLS. Eryl, on the other hand, has his RLS under control by severely restricting carbs. Makes sense. The Hazda aren't eating bread, cookies, chips. Their carbs are tubers, berries and some other vegetables I never heard of along with about 400 different species of birds and four-legged.

I'm looking for the ultimate short-cut, because I LOVE short-cuts. I figure if things like prami down-regulate our receptors (that's what all the dopamine agonists do and possibly the opiates) then there's gotta be dopamine ANTAGONISTs that up-regulate them. Makes sense, no? There are dopamine antagonists, but I don't know if it's a good idea to take them in what might be a futile and dangerous effort to up-regulate our receptors. All of those substances that make our legs go crazy are on my hit list. Melatonin, benedryl, tagamet, and last but not least, drugs like fluoxetine :) :). You see Ani, there's a method to my madness. I have my sights set on you. If you are taking fluoxetine and you stop (very very slowly) and your RLS goes quiet, quieter than it's ever been, then it reinforces my little theory here. I avoid giving advice to those that come on here and are augmenting on the RLS meds - that's what God created Jools and Elfin and Elisse and Lotte and several others for. When the going gets tough, I'm nowhere to be found. You, however, are drug-naive in terms of the RLS meds.

Getting back to your suffering, there are some "natural" emergency meds. Meaning unlike the above, they work instantly. My favorite (in terms of research, not personal experience) is cream of tartar, which is pure potassium bitartrate. Too long to get into (and Madlegs hates long posts), but I understand why it might work. Google RLS and cream of tartar if you're interested. And there's always things like Cannabis and Kratom that work instantly, and at least to me, are "natural" compared to the DAs.

Lastly there's me, again. I get 100% relief by taking one or two capsules of ferrous bis-glycinate (iron) on an empty stomach about one hour before bed. It has to be this form and this time of day. If I take it in the morning it will do nothing for my night time RLS. Only lasts one night. I'm not the only one for which iron has an immediate effect. I'm just the loudest advocate. If you try it (I see you are/were taking iron anyways) and it doesn't work then STOP after that first try. Talk to your doctor about getting your ferritin up, way up, to see if that will help your RLS. And no matter what he says, it's best to take iron every other day and only once on that day because of a little substance in our bodies called hepcidin. Madlegs will literally come to America and shoot me if I get into it here. Muchas suerte!

tagaxel profile image
tagaxel

Please see another physician as soon as possible. No one should be prescribing dopamine agonists like pramipexole to treat RLS anymore. Pramipexole will ultimately result in what is called “augmentation”. That means it will not only eventually stop working but it will make RLS worse. Your physician should have prescribed something like gabapentin enacarbil. It gets worse! Trying to get off pramipexole is almost as bad as trying to get off of heroin or cocaine.

Elffindoe profile image
Elffindoe

It seems we forgot to mention aggravating factors, as well as triggers.

Triggers I tend to think of as short term

Other aggravating factors are longer term.

The main ones are other medications

As you've probably read already MOST antidepressants make RLS worse and the ones that don't aren't particularly good for depression.

A tricky one is sedating antihistamines. Neuroleptics are usually one of these, but the tricky thing is that they're often found in over the counter medicines e.g. cough meds, anti-allergy meds, sleeping aids and some anti-emetics/motion sickness meds.

Dopamine antagonists - the opposite of dopamine agonists, found in some anti-emetics.

Proton pump and H2 inhibitor antacids.

Some statins and some blood pressure meds.

Some diuretics

Beta blockers

Plus others

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