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Restless Legs Syndrome
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Dyskinesia from pramipexole

Hello,

First time poster here :)

I've had great success with pramipexole for just over a year, but some months ago, I developd a tic that my doctor diagnosed as dyskinesia. She then switched me to ropinirole (Requip), which I have been taking for 3 nights.

My question is this: How long can I expect the tics to stay around? Won't the ropinirole cause tics too, since it is a similar drug to pramipexole?

Thanks!

PS) The switch to ropinorole was a nightmare for the first couple of nights. I had to inrease the dosage significantly. I've found an equivalency of 1,5 mgs of ropinirole to 1mg of pramipexole, but is that right? It seems more like I have to take double or more to get the same the same relief I get from the pramipexole.

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Btw, I was taking 0,35mg to 0,54mg of pramipexole to get full relief. I am currently taking 1,5mg of ropinirole per night, and that seems to work well, although I am still waking up in the middle of the night with symptoms, but I am guessing that it might be because of the switch of medication. I certainly hope it is!

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Hi Esben and welcome on here,

I can’t answer your queries directly as not familiar with the side effect you describe. Have you checked the pramipexole leaflet for this? Is it a known side effect? I don’t think I’ve heard of it before now.

More generally, are you in US or UK? Either way the dose of pramipexole you were on exceeds the recommended upper daily limit (0.25mg in US and 0.165 in Europe). It may be that you need to discontinue the dopamine agonist drugs altogether (pramipexole and ropinerole are both d/as) and start a different form of treatment such as an anti-convulsants (lyrica - pregabalin - or gabapentin) or an opioid.

The shorter time you are on the dopamine agonists the less long term damage they are likely to do. Are you familiar with the concept of augmentation? Put it in the search bar to get loads of (probably unwelcome but nonetheless important) info.

Have you had your serum ferritin levels checked? Raising iron can result in a considerable improvement in symptoms of levels are low.

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Thanks, involuntarydance (great handle, btw)

I'm in Denmark, where the max recommended dosage of pramipexole is 0,54mg. The max dosage of ropinirole is 4mg here, and as mentioned, I am trying to stick with 1,5mg. I am experiencing daytime symptoms at that dosage, however.

I have heard of augmentation, but I am not really sure what the difference between tolerance and augmentation is. It almost sounds like you are discouraging any use of DAs; is that correct?

Dyskinesia is a wellknown side effect of dopamine agonists and other PD medication, as far as I know. I didn't know about it either untill my doctor told me that my tics were probably dyskinesia.

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I wouldn't say that I personally am discouraging the use of dopamine agonists - I have recently added back in a small dose of pramipexole (0.044mg) to my own regime - but this would tend to be against the general trend. If you look at the Johns Hopkins rls website and/or that of Dr. Buchfuhrer (rlshelp.org) you will see that experts in the condition are moving away from using d/as as a first line treatment due to the problem of augmentation. What I do discourage is for sufferers to blindly take the drug and increase the dose (a trap I fell into myself) without first informing themselves very fully about the potential suffering it can lead to.

Augmentation differs from tolerance in that effectively the drug starts to feed the condition and makes it actually worse (as opposed to merely becoming ineffective to treat underlying symptoms). Thus, symptoms typically spread to other areas of the body than just the legs, start to onset (excuse bad grammar) earlier in the day when previously they may only have been experienced at night and/or they become more intense, severe and/or disruptive.

I note you are experiencing daytime symptoms and wonder if that is due to augmentation or perhaps your rls always presented during the day? In their book 'Clinical Management of Restless Legs Syndrome' Drs Lee, Buchfuhrer, Henning and Allen state in relation to ropinerole 'The FDA-approved maximum dose is 4mg but as discussed above for pramipexole, not exceeding 1mg per day may reduce the odds of side effects.' Augmentation is typically the worst side effect of the drug. I believe that the US experts have since hardened their stance in relation to recommending limiting the dose of ropinerole to 1mg. I would suspect that the time may be approaching for you to consider using a different medication to manage your symptoms. I reiterate that the iron is a very important potential treatment (important to check serum ferritin before starting it though). Best of luck anyway and thanks for your comment about my tag :)

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I will definitely try to keep the ropinirole dosage as low as possible. I had considered upping it, but now I'll try to go for 1mg.

If I were to lower my dose, what other medications would you recommend? I've tried everything under the sun when it comes to OTC stuff, and I don't think my doc will be prescribing any opiates (at least until I go through all the other drugs she will probably try first).

Will any old iron supplement work if I need my serum levels to rise?

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Yes, I have never had much luck with otc stuff - other than iron. There is a large number of people who find that dietary changes are helpful.

Most on here take iron bisglycinate (aka 'gentle iron') which does not need to be taken with vitamin C. Iron should ideally be taken on an empty stomach and no eating for an hour afterwards. It is not recommended to take it until you have checked your serum ferritin as obviously hemochromatosis is a serious condition also.

Rls is tricky to treat and I should say that I have no medical qualification and only know about rls through research and my own experience. Based on all this, however, I would strongly endorse your decision not to increase your ropinerole dose. The other family of meds used for rls is the alpha2delta ligands (anti-convulsants) - usually gabapentin or lyrica (pregabalin). Dr. Buchfuhrer favours lyrica over gabapentin as far as I can recall. It can be better absorbed but my understanding is it is worth trying each of them if one doesn't work. Your GP may be prepared to prescribe one of these to supplement the ropinerole. I would suggest informing yourself about these drugs before embarking on them however. Unfortunately, all of the prescription drugs for rls bring problems of their own and it is a good idea to be forewarned of potential difficulties.

It is necessary to titrate up with these drugs and they can take a while to kick in so the sooner you introduce them the better if you decide to go down this route. Incidentally, the EU has licenced an opioid product, targinact, specifically for the treatment of rls. Your GP may not be aware of this.

Generally I have noticed that a combination of drugs, each at a low dose, is often more successful as a treatment for rls than relying on a single drug. The other thing I notice is that chasing symptoms with a drug often leads to disaster with rls. It seems to be more efficacious in the long run to reduce rather than increase the dose when a drug ceases to be effective and use a different one for a while so that when you return to the original drug your system is once again sensitised to the effect of it.

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I take ferrous sulfate

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Dyskinesia can be caused by long term use of levodopa but is uncommon with dopamine agonists. My limited knowledge, drawn from involvement with Dystonia, is that dyskinesia can be eased by stopping the cause. In other words if you are susceptible to dyskinesia with dopamine agonist use then don’t use them

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My doctor thinks that switching from one DA (pramipexole) to another (ropinirole) might do the trick, but so far - 4 days in - no drastic improvement have appeared. I am currently taking 1mg of ropinirole, and it is effective as far as falling asleep is concerned, but I wake up 4 in the morning with a bad case of RLS. That might actually be worth it, though. Let's see what the next few days bring about.

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Hi I had been on pramipraxol for about 9 years but was getting augmentation. I saw a neurological professor in London who has recommended the long acting variation of pramiprazole. It's been brilliant so far with a once daily tablet keeping all my symptoms completely in control. Such a relief. My GP was reluctant to prescribe as it's cost is around £130 a month, but I managed to persuade her.

Good luck with the change in meds

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Its not advisable when you have augmented on a dopamine med to go on to take another Usually you will augment again. I really hope the slow release will keep working for you.

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Essen by tics do you mean little movements, when I was on Requip I started to have little head shakes never when walking just when sat down, now on the patch and it’s still the same x

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Dyskinesia feels like muscle contractions of the small muscles in the face, particularly around the mouth and nose. Usually the contractions are visible, but when they become more intense, they look like tics, in my case. I also have some head movement related to those muscle contractions, so yes, that might be dyskinesia.

I'm sure a lot of people on RLS medication are unaware of dyskinesia or simply do not notice it.

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May be it’s only you and me have them x

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Hi I have started dyskinesia around my chin and mouth and my doc has given me Betamine (thiamin) which eases it. Not sure what is causing it. jan

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Hello Esben

Highly unlikely you have dyskinesia related to taking pramipexole as dyskenisia is a permanent side effect of the mainly older group of anti psychotic medications. There are treatment options for dyskinesia as well which decrease the severity of symptoms.

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Excuse me for asking, but are you a healtcare professional? I would like to know, since my doctor seems pretty convinced that I do have dyskinesia. Also, a simple google search reveals that dyskinesia is a side effect of pramipexole, so I'd like to know your reasoning.

I am only taking pramipexole, so I am wondering what is going on if it isn't dyskinesia. I've never had these symptoms before taking it.

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Jesus Christ, I just remembered that I recently added lyrica to my RLS regimen. Could that be it? My doctor knows about it, but she hasn't mentioned it. A google search reveals that dyskinesia is also an (uncommon) side effect of lyrica, so when you add that to the pramipexole... Hmm, I think I see the problem :)

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Yes, I am a retired psychiatriac and general nurse. 30+ years in mental health. I have no experience with RSL medication and dyskinesia. Many years ago with the older type of anti psychotic medications, dyskinesia and akathesia etc.. were frequent side effects of the medications but not so much now that the anti psychotic drugs are more refined. If your doctor believes it is dyskinesia there is appropriate treatment for that but the diagnosis of dyskinesia should really be confirmed by someone who has the expertise and knowledge to diagnose accurately.

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Thank you for replying. Are you suggesting that I ask my doctor for a consult with a neurologist to confirm the diagnosis? Whom should I ask to confirm the diagnosis?

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sorry, meant to add, by being linked into this forum I have read of people experiencing all sorts of strange tics and discomfort from RLS of other parts of the body other than legs which are the areas that I am affected. It would seem, that by reading other peoples comments that RLS is not very well understood as a condition. It could be that the symptoms you experience and have described are part of your individualised RLS condition.

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To my knowledge it is only neurologists that can accurately diagnose RLS. but saying that not all of them are good at it of course. I saw a neurologist for a confirmed diagnosis, RLS is also a sleep disorder so it it quite complex and not enough research has gone into finding out how or why it starts or who might be more at risk from developing it. My mother and my daughter also have it so it would suggest it could be familial. For many years doctors I consulted with the problem told me 'it's all in your mind'. It has only fairly recently been being taken seriously. This forum is provides good support to sufferers as there are many many informed people who are available to answer questions if you have them.

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I’m pretty sure rls can be diagnosed by any doctor. In their medical textbook ‘Clinical Management of Restless Legs Syndrome’ Drs Lee, Buchfuhrer, Henning and Allen, world Leading experts in rls, set out diagnostic questions for general practitioners to enable them to make a diagnosis. It is a relatively common affliction and general medical practitioners can prescribe almost all the recognized treatment drugs.

If you go to the UKRLS website they have a list of questions to enable a personal diagnosis.

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That could be so, I just know my personal experience which was my general practitioner referred me to a neurologist for clarification of diagnosis, and the neurologist had equipment he used to test my legs for RLS. My GP does not have that equipment. Thanks for the information.

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I have NO idea what equipment your neuro thinks can diagnose RLS,!! There is NO test for RLS, so that is a worry that a neuro thinks they can diagnose RLS with some type of equipment. Every GP can diagnose RLS all they have to do is read the criteria for RLS and see if that matches up to what you are saying your symptoms feel like. Alot of GP's send you to a neuro when they cant seem to find a med to help you and hope a neuro can help with that. I have never seen a neuro, my doctors have always prescribed my meds.

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I am describing my experience with receiving a diagnosis.

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