Is there an RLS/PLM medication suitab... - Restless Legs Syn...

Restless Legs Syndrome

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Is there an RLS/PLM medication suitable for Driving?

Josh2020 profile image
12 Replies

Hi. I'm a Train Operator and have suffered with RLS/PLM for many years. Until now I've been able to manage mild symptoms and only really suffered if I was over-tired or exhausted. The condition runs in my family and my Mum was prescribed Sinemet and my sister is taking Ropinirole. My symptoms have recently escalated significantly, and I've now started taking Pramipexole. It works, but leaves me incredibly fuzzy headed and fit for nothing the next day.

The problem I have is my job. My employer, quite rightly, restricts the use of Pramipexole and will not allow me to drive a Train whilst taking it. Though I've welcomed being able to sleep through the night whilst taking this medication, I simply cannot take it longterm. Every time I speak to my GP about other medications, they seem baffled as to what they can prescribe that will not induce drowsiness or dizziness.

Every medication I've looked at that's currently used to treat RLS contains either Dopamine, Opiots or Hypnotics and is not conducive to my job. Are they any other treatments that have been prescribed that enable you to drive?

Many thanks

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Josh2020
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12 Replies

I have just read your post and feel compelled to reply.

My apologies if anything I write isn't what you would want to hear.

Firstly, I wonder if when prescribing you pramipexole, your GP mentioned the side effects of pramipexole and also any risks or complications of the drug.

Particularly, did the GP warn you that pramipexole can cause augmentation and Impulse Control Disorder?

In addition, did the GP discuss using an alpha 2 delta ligand instead of a dopamine agonist?

If the answer is "no" to both, then your GPs conduct would appear to be unethical and possibly illegal. It does appear to be contrary to the guidance issued by the General Medical Council (GMC), and seems to ignore the law of informed consent.

Please follow this link for information about this

healthunlocked.com/rlsuk/po...

You could, I believe, if you wish, report this GP to the GMC.

However, I imagine that your GPs apparent misconduct is due to ignorance rather than negligence. You might like to point their faikure to them.

I'm afraid it is true that it is associated with sudden onset sleepiness during the day so I can see why your employer would want to restrict it. Be careful that your GP also doesn't report this to the DVLA.

There is possibly good news in that there are other medications and other things that can be considered.

I will add more later.

Firstly, if your GP hasn't already done so, they should have carried out blood tests for ferritin and haemoglobin. This is because RLS is associated with iron deficiency in which case iron therapy is a treatment.

You can refer your GP to the following web page

sciencedirect.com/science/a...

Please note that even if you don't have iron deficiency anaemia, iron therapy can still be of benefit especially if ferritin is below 200ug/L.

You can also refer your GP to this web page which is published by the UK National Institute for Health and Care Excellence (NICE)

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

In addition you will see that NICE also suggest that your GP should also discuss anything which is precipitating or exacerbating your RLS.

Secondly, dopamine agonists aren't the only first line medication to be recommended for RLS. The standard alternative is an alpha 2 delta ligand, either pregabalin or gabapentin.

If on the NICE web page you scroll down to the heading "What drugs should I consider to treat restless legs syndrome?" you will see this clearly stated.

You will also see that it also suggests that your GP should make you aware of augmentation and Impulse Control Disorder caused by dopamine agonists.

NOTE : pregabalin can cause drowsiness. Again this is usually when you take it, i.e. at night. However, the sudden onset sleepiness associated with pramipexole does not appear to apply to pregabalin. I imagine that you could clarify this with your occupational health department.

Again, this side effect can wear off after a few weeks.

Please also note that your GP is out of touch, alpha 2 delta ligands are now recommended as the first medication for RLS, NOT dopamine agonists and this is because of the very common risk of severe complications i.e. augmentation and less commonly Impulse Control Disorder.

Here is some inlormation on this.

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

Overall, I'm sorry that you may feel your employability is being threatened and this appears to be due to your GPs ignorance about how to manage RLS. In the first instance you may wish to discuss this with them and refer to the information I've given links to. You could also discuss with your employer if pregabalin is acceptable.

Incidentally, I note your sister is prescribed ropinirole which is also a dopamine agonist and she should therefore have also been told about augmentation and Impulse Control Disorder. If she wasn't, especially if this was since 2015 , then her prescribing doctor also apparently acted unethically and illegally. It's possible if she does not know about this, she may already be suffering one of these complications.

I also note your mum is prescribed Sinemet. If she is prescribed this for RLS and takes it regularly, i.e. every day, this is no longer prescribed for RLS except on an occasional basis i.e. once ot twice a month. It's only prescribed regularly for Parkinson's disease.

Ropinirole very commonly causes augmentation, pramipexole is even worse for causing it, sinemet is the worst possible medication for causing augmentation.

I appreciate this is a lot to take in, but I hope you find it helpful inflormation.

Josh2020 profile image
Josh2020 in reply to

Thank you for such a detailed reply. I'm very grateful for all of the information you've provided. My GP did a series of blood tests and found my Iron levels to be normal, so didn't prescribe an iron supplement. They did however discover that my Folic Acid was lower than it should be, so I'm taking 5mg of Folic Acid a day. My Thyroid was also shown to be functioning normally. Interestingly, the Locum GP that dealt with me did mention Gabapentin initially. She believed she was unable to prescribe either Pramipexole or Ropinirole without further specialist investigations. However, she called me back to say that upon further investigation she had discovered that she could prescribe Pramipexole, but not Ropinirole. I'm on my sixth day of taking Pramipexole but will read the links that you've provided and speak with my GP again asap.

As a side note, my Mum passed away ten years ago from Cancer, but she had suffered for over 30 years without any treatments before finally being prescribed Sinemet in the early 2000. She took it daily (2 tablets a day, one for day and one for night). For her, the drug was a miracle cure. It quite literally stopped RLS in its tracks and she never suffered from any side effects. Perhaps she was very lucky, given the augmentation issues you've described.

Again, thank you so much for the information. Truly grateful. Many thanks.

in reply to Josh2020

Hello again

Sorry about your mum.

re "Normal" iron levels. Your doctor may be correct in saying your results are normal.

However, as the link below demonstrates, unless your ferritin is at least 200ug/L you may be suffering from brain iron deficiency which will be contributing to your RLS.

sciencedirect.com/science/a...

"Normal" can be as little as 12ug/L

If your ferritin result was under 75ug/L your doctor should have advised an oral iron supplement, as noted in this link

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

Sorry to undermine any trust you might have in this doctor, but as regards knowledge of RLS they appear to be sadly lacking. This is not at all uncommon as you can read from many posts in this forum.

Your doctors belief that she was unable to prescribe either Pramipexole or Ropinirole without further specialist investigations was incorrect.

Her claim that she could prescribe Pramipexole, but not Ropinirole, is also incorrect, she can. The NICE guidance I have given the link to above is specifically for GPs and clearly states that Ropinirole or rotigotine can be prescribed for RLS with no mention of specialist investigations. In fact there are NO specialist investigations for RLS.

The same guidance also states she can prescribe gabapentin, but pregabalin would be better and as you say yourself pramipexole is not acceptable to your employer.

Hopefully, you are on the lowest dose of pramipexole 0.088mg (0.125mg). I'd suggest that you do not increase this dose. These drugs are notoriously difficult to withdraw from.

LotteM profile image
LotteM in reply to Josh2020

Tough situation, Josh!

In addition to what Manerva has written, I think it is portant you focus on the side effects of the medicines prescribed for RLS. Going after iron first is a very good idea, although if you start to take iron orally, and if you respond to it positively (about half do) then it is still sa slow route. Thus, medicines may be necessary at least for the short term. Be aware that gabapentin and pregabalin can also cause drowsiness, as Manerva writes. But both with effects and side effects it is always wait and see how the individual responds. Re gabapentin and pregabalin, they take a few weeks to become fully effective. And side effects that occur initially may fade or disappear after a few days to weeks. Note the use of 'may' and 'can'. It is always trial and error with these things.

In your position I would first your employers stance with your gp and together think about how to inform your employer and what to tell them. You may want to point out that not sleeping well due to the RLS carries a large risk of daytime sleepiness as well.

Joolsg profile image
Joolsg

Manerva has given you excellent advice. I would seriously consider stopping the pramipexole now as the withdrawal will be very mild. If you stay on it longer the withdrawal can be brutal.

Raising serum ferritin above 350 dramatically improves RLS in 60% of patients so that should be the first thing you should concentrate on. Your GP will say levels are normal if they’re above 15 which is way too low for RLS sufferers.

Consider pregabalin- if you take at night, you may not have daytime sleepiness.

Also make sure you’re not taking meds that cause/worsen RLS like anti depressants/anti histamines/cough & cold meds.

Josh2020 profile image
Josh2020

Thank you so much to all of you for your advice.

I'm going to speak to my employer and ask them if Pregabalin or Gebapentin are non restricted medications. I will also double check my exact Iron level with my GP. I'm diabetic and do take Metformin and Candesartan for HBP, so hopefully they don't conflict with alpha 2 delta ligand medication.

I'm on the lowest dosage of Pramipexole 0.088mg, so will stop taking them to lessen any withdrawal as soon as possible.

Joolsg profile image
Joolsg in reply to Josh2020

Interesting- if you’re taking metformin for type 2 diabetes, metformin can affect sleep. If you’re not getting deep sleep, the RLS is more likely to wake you.

Many people have reported that a keto diet has resolved their RLS so that may be something else you could try as it also helps diabetes type 2.

restlessinlondon profile image
restlessinlondon

I am constantly amazed at the wealth of knowledge and help people receive on this site. Just to add my two pennyworth, it may be helpful to keep an eye on what foods may be acting as a trigger for the RLS. These can be many and varied and depend very much on the individual, so check on dairy, wheat, fried food, sugar, alcohol, caffeine among others. It can be a pain but I've found it helpful.

WideBody profile image
WideBody

Josh2020, I came here to say exactly what Manerva said. Manerva is just much better at explaining. Iron was my issue. I was always "normal", until I got my infusion. My "normal" ferritin was 30. I got an infusion of iron and now my new normal is 200+.

Life is much better if I keep my iron up. Iron is not a cure and it takes a long time (months), but it is the only thing so far that has helped me. The trick for me was a Morning Fasted Full iron panel. Ferritin is just one number, Transferrin Saturation Percentage and Serum iron are just as important (TSP is more important in my book).

Did you do the Full morning fasted iron panel? Can you share your numbers?

I wish I never heard of DA drugs. Please, Please be careful.

Graham3196 profile image
Graham3196

I have sent some information by private message

Good Luck Graham

Josh2020 profile image
Josh2020

Thanks again to all you whom have sent information relating to the treatments and lifestyle changes relating to RLS/PLM.

Just as a heads up to anyone out there in the same situation as me, where your job is focused on driving machinery. I've now been advised by my employers OH department that Gebapentin & Pregabalin are also restricted medications and as such I'm unable to perfom safety critical duties whilst taking them.

In terms of prescribed medications, this is a complete road block for me. Basically all of the Dopamine and now alpha 2 delta ligand medications prevent me from being able to drive a train. I will now go back to my GP and confirm my iron level and seek further guidance.

Are there any private specialists in the UK whom have a greater knowledge of this condition, as well as success treating it?

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