Getting worse

[Baildon28]

How many mg can you safely take of roprinarol in a day.its driving me mad at the moment.

[Kaarina Administrator]

Hi Baildon, It is now thought that no more than 1 - 2 mg of ropinirole should be taken daily. How much are you on? If it is a high dose you could be suffering with augmentation.

healthunlocked.com/rlsuk/po......

[Macsen in reply to Kaarina]

As I write this,I am standing/leaning over a table!I have suffered for many,many years but rls is getting worst.I am unable to function through the day,sit,for long,stand etc.A short car journey means stopping regularly.ie every 10 mins.As of late I have approx 2 hours exhausted sleep per night.....I could go on....I have used premapaxol,and am now on 8 mg nightly,Ropnerole but am trying to split them to help in the day.......not working!.please can u suggest where I go from here?????(my G.P.said I could up the dosage!)

[Kaarina Administrator in reply to Macsen]

So sorry to read your post. Are you saying that you are now on 8mg ropinirole? Your doctor says you could increase the dosage? That is horrendous. Your doctor has absolutely no idea. You are suffering badly with augmentation if you are now on 8mg of ropinirole. No wonder you are unable to function through the day. The only way is to ween off the ropinirole very, very slowly. You will need help from your doctor to do this. There are others in this community that will be able to help you with this much more than me. Manerva, for instance.

[Hidden in reply to Macsen]

Hi Macsen, welcome to this forum. I'm very glad you've found it.

I am so sorry to hear you are going through these problems at this time. I can however give you some reassurance that your current situation can be remedied.

The first thing I would suggest is that you ignore the advice of this doctor. As Kaarina says it appears that this doctor is profoundly ignorant when it comes to the management of RLS. Possibly in many ways.

I am guessing that since you mention GP that you live in the UK and will assume that in what I'm about to write. If not I will have to attempt to provide you with a different set of resources.

I will explain to you what the problem is and also suggest some things you may do to correct it.

The maximum prescribed dose of ropinirole for RLS is 4mg. Your GP has prescribed a dose only intended for Parkinson's disease.

Suggesting that the dosage be increased will only make your symptoms even worse.

What you are currently suffering from is known as "dopaminergic augmentation". As Kaarina says this is quite clear from your description of your symptoms.

Augmentation is caused by longer term use of some drugs particularly a class of drugs known as dopamine agonists (DAs).

Ropinirole is a DA, so is pramipexole and so is rotigotine. I wonder why then, you changed from pramipexole to ropinirole. If you were having problems with pramipexole then switching to ropinirole would not help.

There are three things you therefore need to do in order to regain some control over your RLS symptonms - - - and your life!

Firstly, it is recommended that you seek blood tests for iron deficiency., that is, serum iron, transferrin and ferritin. If your ferritin is less than 75 then you should start on an oral iron supplement. You will need a GPs cooperation in getting a blood test and in giving you the result.

In getting the result you need to know the exact numbers, "it's OK" or "It's normal" is of no help whatsoever. It sounds as if your GP may have no idea about this. After that, you don't need a doctor. You can take an over the counter iron supplement.

Secondly, it's a good idea to look at if there's anything else in your situation that might be making your RLS worse, i.e. exacerbating factors which you can avoid. The main ones are other medications. There is a long list of such which your GP may not know about, so I suggest you name any other medication you're taking either prescribed or not.

Thirdly and most significintly your best option for treating your augmentation is to stop taking the ropinirole or any other DA.

I appreciate that you may find some difficulty accepting this as it seems both counterintuitive and is the exact opposite of what your GP says.

What I'm suggesting however, is not an easy thing to do.

You must NOT stop taking a DA suddenly, this is dangerous. What you may find, as many people have, is that when you even reduce the dose then withdrawal effects will start occurring within 24 hours. They are temporary, but can be severe. The greater the reduction you make the worse the withdrawals can be. The trick then is to reduce the dose slowly and by small amounts. I'm sorry to say, to avoid the worst withdrawal effects, it may take you months or even a year to wean off ropinirole. That's why it's important to consider the first two things I wrote.

During this time, some people manage to get a prescription for an opioid to help with withdrawals, but this is in the hands of the doctors.

It is also a good idea to consider what you can replace the DA with. DAs are not the only medications for RLS. The standard alternatives are an alpha 2 delta ligand or an opioid. You can start taking a ligand at the same times as weaning off ropinirole, it may help, but you may not feel the full effect until you've stopped the ropinirole.

You are not alone. There are so many people who have been the victim of being prescribed or over-prescribed DAs and ended up suffering as you are now and with more harm than good from their GPs.

Unfortunately you will; need to gain the cooperation of a GP whilst weaning off ropinirole and with an opioid or a ligand.

You can try gaining the cooperation of your current GP, or you may have to change GPs.

Either way, here is some information you can give to whichever GP you approach.

Please note, that what I've written here, apart from my comments on your GP is based on authoritative sources. That is, this in NOT my opinion. Below are links to these sources.

Iron therapy for RLS

sciencedirect.com/science/a...

DAs and augmentation

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

UK prescribing guidance for ropinirole for RLS

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

UK guidance for the manabgment of augmentation

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

Index page of the UK NICE guidance website for RLS (for GPs).

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

Unfortunately the last three web pages are not accessible from outside the UK.

Please also read the many other posts from people suffering augmentation in this forum.

[Kaarina Administrator in reply to Hidden]

Thank you Manerva. Another excellent, helpful reply along with links.

[Beechie2014 in reply to Hidden]

Is it just me that reads from the sidelines and admires Minerva's knowledge and understanding of this horrendous condition!!! Currently down to 4mg of roprinerole from 12mg as prescribed by my gp. I just wish you could come to my gp appointment with me to educate them 👨‍🎓

[LotteM in reply to Beechie2014]

Well done so far Beechie. 👍🏻💪🏻That was an enormous dose of ropinirole. Keep going. Slowly. And never hesitate to write a post of you need support or simply want to moan about your withdrawal ordeal. We understand!

Do you have good help and support from your doctor? And a good plan for an alternative treatment?

[Beechie2014 in reply to LotteM]

Thank you very much! No my gp practice are being little to no help, neurologist seems to be the place to go! I am taking clonazepam at night to help with the horrid augmentation symptoms. I wont be going back on them in a hurry, my main concern was the time scale that my gp suggested for decreasing the doses....he wanted me to drop 4mg a week and be off them 100% within 3 weeks. I have managed so far but the 4mg I take now is barely doing anything as is. I will half them again tomorrow and hope that is doable. Thank you for your support 🤗

[DURAMAX07 in reply to Macsen]

I DONT KNOW YOUR STORY BUT TRY METHADONE 2X A DAY WILL STOP RLS FIRST DAY YOU TAKE IT

[DURAMAX07 in reply to DURAMAX07]

10MG METHADONE 2X DAY WILL HELP YOU ON DAY 1

[Hidden]

Hello Baildon, the "official" maximum is 4mg.

However, please note what Kaarina writes.

It's possible you may have augmentation already, but if you don't you do appear to have "loss of efficacy". This is a precursor to augmentatipn and no matter your current dose it may be unwise to increase it.

An increase can precipitate augmentation.

[Macsen in reply to Hidden]

Wow,Minerva.Thank you so much for taking the time to give me such a detailed answer,that has filled me with hope!You explained so thoroughly I felt that I was in our Drs Surgery,but with far more understanding of the situation.I am at my wits end,worrying our family,had to give up driving,no theatre,cinema-in fact all I enjoy,severely curtailed .(not to mention panda eyes,lethargy,and a danger to myself and others!)Diolch yn iawn unwaith eto.Thank you very much once again (Welsh) xx

[Hidden in reply to Macsen]

I hope things work out for. You may have a hard time for a while, but can get through.

I was once in the same situation myself, taking a dopamine agonist and suffering augmentation.

I weaned off the agonist over 10 months.

I now only take gabapentin nad have no real problems with my RLS at all.

[RLSofManyYears]

And just to add the others, whatever you do, go up/down in small doses, typically 0.25mg.

[dklohrey]

I was on ropinirole for about 25 years. There were times while taking the drug that I wondered it I still had RLS, as I had no symptoms. I started at 1 mg, progressed to 2 mg and finally topped off at 3mg. It was at the 3mg dose that I eventually started to notice augmentation but it was so subtle that I thought it was just the progression of the RLS. Ropinirole served me well for many years and I am thankful for it. It helped get me to retirement age. I am now on gabapentin. It does not work nearly as well as the ropinirole. I am lucky to get 4-5 hours of sleep a night if I am lucky and I am at 1200mg which I believe is the maximum recommended. Anything above that really improves the RLS very little if at all. I was fortunate to get relief from ropinirole for my 25 years, as I believe that success rate is somewhat unusual. It took me about 2 months to ween myself from ropinirole and that involved some sleepless nights but it was not too bad for me, though I know that some have a much more difficult time.

[Hidden in reply to dklohrey]

Hi dklohrey.

Some info you may find helpful.

The management of RLS is not just about taking medication.

The main cause of RLS is iron deficiency, hence the first treatment to be considered is iron therapy.

Some figures - up to 50% of people with a "ferritin" level less than 75 can gain a benefit from raising the ferritin level to 100.

If that's not sufficient, then 60% of people receiving IV iron infusions can have their RLS eliminated, although this is not a cure.

See this link

sciencedirect.com/science/a...

It's also recommended that RLS sufferers should check if there is anything exacerbating their RLS.

This could be any one of a number of medications, either prescribed or not.

It also includes various dietary factors and any inflammation.

The maximum dose of gabapentin for RLS is NOT 1200mg, it's 2700mg. However this is a bit misleading, because gabapentin has some inconsistent absorption properties meaning the higher the dose, the smaller the proportion of it you can absorb.

At best, with lower doses 80% of it is absorbed. At higher doses it can be as little as 20%.

In effect this means you CAN take more than 1200mg, but there is NO POINT, because you won't get any more benefit.

One solution to this is to switch to pregabalin. Pregabalin once absorbed is converted into gabapentin, so same thing really.

However the advantage of prebabalin is that 90% of it is absorbed no matter how high the dose.

Hence although 200mg pregabalin is equivalent to 1200mg gabapentin, it may be more effective. The maximum dose for pregabalin is 350 to 450mg.

A further point is that if the pregabalin fails to work. Then the next step would be an opioid.