Opinions please on whether anyone wou... - Restless Legs Syn...

Restless Legs Syndrome

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Opinions please on whether anyone would increase their Ropinirole dose?

21years
21years

Hello everyone,

Can I ask what you would all do in my situation as I am in a real dilemma.?

I had been taking Ropinirole for a number of years before it started not to work and I couldn’t tolerate the extra dose (became agitated and panicked) I was then prescribed Pramipexole which worked for quite a few years until this no longer helped. About three weeks ago I went back on to Ropinirole which was pretty horrendous as they took a time to work, I had to increase the dose gradually and I suffered terribly with lack of sleep. This has meant I have had to take time off work. I tried to go back to work as the sleep did increase but then I only lasted a day and a half and was signed off again. I have subsequently found out that my ferritin levels were extremely low (off the scale) and started on Sunday taking 200mg of Ferrous Sulphate, these can take up to 4-6 weeks to become effective. At the same time the doctor very reluctantly increased my Ropinirole dose to 2mg and was very firm to say this would only be until hopefully the iron tablets helped with the restless legs. The trouble is after just a week these already appear to be losing their effectiveness.

My employer has been very understanding but I feel terrible that I am not able to go in.

My question is assuming the doctor will agree and I can tolerate the extra dose, should I increase so that I can get back to work?

Thank you for reading this, I am feeling rather anxious about what is the morally right thing to do.

24 Replies
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I am only doing a quick post but, IMHO do not increase the Dopamine Agonist even temporarily. I would look for a short course of opiods like Tramadol or 3ven Targinact if in the UK or North of Ireland as it is licensed for RLS.

Stick with the iron, take with vit C to help absorption and on empty stomach.

If you can access it safely, cannabis can be a great help as can Kratom googlekratom Holy grail for RLS for info posted here.

Hope that sets you in the right direction.

21years
21years in reply to raffs

Thank you,

I will look into these options. I did try CBD oil but this only worked for a while also.

Madlegs1
Madlegs1 in reply to 21years

Take the iron every second day. Your body will absorb it better.

21years
21years in reply to Madlegs1

Thank you

raffs
raffs in reply to 21years

CBD oil isn't the cure all it is made out to be. There are 100+ cannabinoids not to mention flavinoids and Terpenes. A full spectrum oil or the plant materials themselves are needed, not one small piece of the solution. Take care though, the legal ramifications can be severe so if you go down the cannabis route you need take extra care.

21years
21years in reply to raffs

Thank you

Hi, from what you write, it's highly likely that you're suffering from a condition known as "augmentation" which is caused by taking a dopamine agonist over a long time. Pramipexole and ropinirole are both dopamine agonists.

I suggest you read the information from the following link and discuss it with your doctor

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

21years
21years in reply to Manerva

Thank you Manerva,

I am definitely suffering from augmentation. Just pinning all my hopes on the iron supplements working.

Manerva
Manerva in reply to 21years

I wish you success with the iron, but for really effective relief of augmentation you ought to stop taking ropinirole, preferrably altogether.

Please heed the warnings about doing this suddenly and advice on how to minimise withdrawal effects.

21years
21years in reply to Manerva

Hi Manerva,

Thank you as always! I feel I just need to get through the next 4 weeks or so before the iron kicks in. I really appreciate that increasing the dose wouldn’t be the best idea though.

Manerva
Manerva in reply to 21years

Sorry to tell you this, but being realistic, it may take longer than a few weeks for the iron to work.

It depends on your ferritin level. If you can raise it to 100ug/L then this gives you a 50% chance of it improving your symptoms. Oral iron will only really help do this if it's currently under 75ug/L. If it's much less than 75ug/L it could take up to 3 months to do this.

21years
21years in reply to Manerva

It was really low, off the scale I was told at 12 ug/L. If it is likely to take so long I may have to speak to my doctor about Pregabalin which was my intention before I realised about my iron levels. I asked the doctor if I should be worried about such low levels and she said no as all other tests were fine.

Manerva
Manerva in reply to 21years

12ug/L is actually considered the bottom end of "normal", it's just that for someone with RLS it's much too low. For somebody who doesn't have RLS it may be OK, as long as everything else is fine.

Assuming that your doctor also tested your Haemoglobin (Hb) and that is OK then you're good to go.

21years
21years in reply to Manerva

Yeah, she did test my Haemoglobin and confirmed all was fine.

How is your RLS? You are so helpful to everyone else. I just wondered how you were doing?

Manerva
Manerva in reply to 21years

Thanks for asking.

My RLS is more or less non existent thanks to gabapentin. I have the occasonal episode lasting a few minutes 2 - 3 times a week.

21years
21years in reply to Manerva

That’s great news

No. You’ll just make your RLS worse and have a more difficult time getting off it. You need to get on alternative drugs like pregabalin or opioids.

21years
21years in reply to Joolsg

Thank you

Agree with all the answers given above. I swapped from ropinirole to gabapentin and so far it’s been great. Plus I take a gentle iron with vit. C. I had to increase the gabapentin one time.

21years
21years in reply to Suhavard

Thank you, unfortunately I don’t think Gabapentin is licensed in the UK so would need to see a specialist first. It does sound very good though. I can’t see a specialist until I have allowed the iron tablets to work which is a nuisance.

Joolsg
Joolsg in reply to 21years

I think many people here in the UK are on Gabapentin or pregabalin for RLS. I’ve been on both. Has your GP refused?

Refer them to the latest NICE guidelines.

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

It’s off label but many GPs prescribe it.

21years
21years in reply to Joolsg

Thank you. When I spoke to my doctor she said that they would need a specialist to prescribe them. I will have to refer her to the latest guidelines and see what they say.

YodaDog
YodaDog in reply to 21years

Like others have said, many, many GPs prescribe it, it doesn't need to be prescribed by a specialist or neurologist, it's just 'off-label'

21years
21years in reply to YodaDog

Thank you

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