I have been trying to reduce my Ropinirole dose from 2mg to 1.5 mg for the past 3 weeks. For the first few nights all was well but this didn’t last long as the RLS kicked in again. I used to use Ropinirole before I augmented, then went to Pramipexole and I seem to be going from one to the other for over 20 years. I have been taking iron tablets for nearly two years now and I had hoped that my iron levels would be high enough to try and reduce the dose, but this doesn’t seem to have made a difference. I don’t think I can increase the iron supplement as I already suffer with constipation.
I’m also thinking of going onto HRT but am concerned this may exacerbate the whole thing, so am in a bit of a dilemma.
I would be so grateful for some ideas on what to do. I’m going to try staying on the reduced dose of Ropinirole or is this just a waste of time?
Thank you!
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21years
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No. It is not a waste of time. You mention 'augmented' thus I assume you indeed have augmentation, not just tolerance, e.g. earlier or daytime symptoms or symptoms in other body parts than legs.
My first thought was that you may have reduced by too much. You can stick out the current reduction or go up 0.25mg (half a tablet?). However, increased symptoms are likely to occur after each reduction.
Also, think about your goal. Will it be elimination of meds or change of treatment. Of the latter , check out the Mayo Clinic updated guidelines (SueJohnson has posted and given extracts often, almost daily) to see what you would like and discuss with your doctor. Ot may require some perseverance to get her/him on board.
Further guidance I fond difficult, as you don't give other details about your situation.
Have you checked that you don't take other medicines that may exacerbate RLS? And do have a look at potential triggers, but don't be too hard on yourself. I found dealing with increased symptoms in itself was demanding enough.
Finally, spend some time reading on this forum. You'll find ample ideas and guidance. And never hesitate to ask more questions or experiences. We're here to help and we understand!
Dear LotteMThank you. I will definitely look at the link Sue has just kindly sent me. I may try and up the dose by a little but not sure they do such a small dose in one tablet. I will check on the forum for further info too.
I have been getting the symptoms in my arms which I think means I have augmented.
It’s so nice to know there are people out there who understand, as no one I know has ever suffered and don’t know how horrendous it can be.
Here is the link that LotteM mentioned to the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't at
Https://mayoclinicproceedings.org/a... You say you take iron, but have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. If your ferritin is less than 75 then take iron bisglycinate which is much less likely to cause constipation with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets You have reduced your ropinirole by too much. The usual recommendation is to reduce by reduce by .25 mg every 2 weeks or so. So go back up to a higher dose and after your symptoms settle, start again. If reducing by .25 causes too much symptoms, reduce by a lower amount and wait longer before reducing again. You will still have increased symptoms. You will suffer and may need a low dose opioid temporarily to help out with the symptoms. But in the long run, you will be glad you did. On the gabapentin, beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Hang in there. You can do it and things will get better! I augmented on ropinirole but now take 1500 mg of gabapentin which completely controls my symptoms.
I do certainly get the symptoms in my arms as well. Happy days!!
I had my ferritin levels checked and it was a very low 12, when I last had it checked about 6 months ago it had risen to 86, still not great but much better.
I will certainly look into upping just a tad and then reducing again.
Hi 21years, I see that you live in the UK. When I was weaning off ropinirole, my GP was able to prescribe smaller dose tablets. I had 0.5 and 0.25mg tablets.
As you've been on Pramipexole and/or Ropinirole for 20 years you'll be suffering horrible augmentation so your RLS will be very severe and probably in your arms, hands and other body parts.Raising iron can help some people experiencing augmentation and withdrawal but not all.
As Lotte suggests, slow down if it's becoming too difficult and also see your GP to discuss next meds. Pregabalin or gabapentin are usually the next category prescribed and you could start them now BUT they usually don't help until about a month after the last dose of Ropinirole.
I used tramadol 50mg every 4 hours during the last 2 weeks of withdrawal but actually found cannabis was the best help.
You can get medical cannabis now in the UK and if you applied now you would have a supply for the worst withdrawal stage.
A sedating flower you can vape would be best.
It's really tough but so worth it as the RLS reduces in intensity and if you get the right meds, you can cover the RLS.
Raising serum ferritin levels above 100 serms to help many but some need levels above 300. 20% of RLS patients don't improve at all, despite raising ferritin levels.
Hopefully gabapentin or pregabalin will be successful.
Thank you Joolsg, I had terrible withdrawal when I changed from Pramipexole to Ropinirole and I had to take time off work as I was sleeping around an hour a night. It was the most horrendous time. I’m not sure my work would be as understanding a second time round.
I know Ropinirole isn’t the answer though.
I will look into the two alternatives and then speak to my doctor.
I have tried cbd oil in the past but found that didn’t really help. I will most definitely discuss the medical cannabis too.
I know I need to do this, just ever so slightly terrified.
You would need at least 3 weeks off work to get through the Ropinirole withdrawal. You'll know what to expect if you went through it with Pramipexole.I get SO angry with the UK medical profession.
They refuse to reach RLS so GPs and neurologists have no idea how to treat it and they are still prescribing these poisonous dopaminergic drugs even though the world experts no longer do so, because of augmentation and the terrible withdrawal.
I doubt your doctor will know much so do detailed research and print off everything you can. If your doctor reads the detailed withdrawal schedule, he/she would then be able to write a sick note to allow you time off work. You could then add your holiday time so you have a month off.
It can take weeks/months to find suitable replacement meds that cover RLS.
Print off the NICE, NHS guidelines and the Mayo Clinic Algorithm and this schedule about Ropinirole withdrawal from the RLS experts at Johns Hopkins.
If you need opioids at a later stage, print off the Massachussetts Opioid study which shows low dose opioids are safe and effective.
Yes, I had 3 weeks off work last time and I felt so guilty about it. I had never had to get a sick note before. This was a very, very bad time. It scares me that I am so reliant on this drug and basically can’t live without it.
Doctors just hand out these drugs as if they were sweets. One doctor even said to me that not to worry if I needed to up the dose as I wasn’t on the maximum dose and so there was plenty of wriggle room. I am furious about the lack of care and knowledge. It sounds so minor but it ruins so many lives. If it were any other disease it would be taken far more seriously.
Yep. I agree. My GP was appalling when I was going through Ropinirole withdrawal.I will keep campaigning to get RLS taught and these drugs banned as they are so harmful and lead to so much suffering when they stop working.
I found a supplement made in the UK called Quiet Legs and they help you with a step down process to lessen the Ropinirole and add the supplement. It really helped me lessen what I was taking.
Hi I have just gone through the same has you been on ropinirole for 20 year s and I also had augmentation The first time I went cold turkey it was ok but after 4 weeks I started to fall a sleep all the time nearly wrote my car of has I fell a sleep driving
Second time I did it s bit slower but could not cope with the RLS so went back on again
Third time I treid did it even more slower and it worked but once again I could not keep awake kept of it for 2months but the sleep tiredness was getting worse so unfortunately I had to go back on it i have been back on ropinirole now for a week the tiredness has stopped but like you I want of the drug
My augmentation has gone now due to coming of the meds for a few months I no it will return though I only take o.5 of ropinirole
It's a dangerous drug GP should not give it out like they do
I have found a neat trick to help me with RLS
If it starts try and distract your mind like watch tv I find my RLS goes away then I can go to sleep but does not work all the time
Just keep cutting it down very slowly
I have been at this now for over a year and still not of the drug doctors are a waste of time they don't seem to understand what the drug is doing to you I am 100% sure that our dopamine and serotonin are what is causing the problems but finding someone who understands these chemicals is impossible
I have now coming to the thought that I am on this drug for the rest of my life so I have to control the drug not the drug control ing me
I am just about to find out about serotonin has this is the sleep chemical in your head if I could stop the sleeping problem I know I could come ropinirole I have even contacted the manufacturer of the drug but was a waste of time
The problem is there is no research been done of coming of Ropinirole and ther lies the problem
There are other drugs to control the RLS. Did your doctor not discuss these with you? If you keep going back on Ropinirole or other dopamine agonists the torturous cycle will continue.Your D1 receptors will be permanently over stimulated so augmentation will keep happening.
Please consider stopping again and trying gabapentin/pregabalin or low dose opioids.
And of course, ensure your serum ferritin is above 100.
The doctor couldn’t be less interested I’m afraid. It makes me feel so angry that I am now so reliant on these drugs. I am going to try and reduce the dose as low as possible and go from there.
If you're in the UK you could ask to see Prof. Walker at Queen Square. He is familiar with augmentation. But do not consider the Neupro /Rotigitone patch. He will prescribe gabapentin/pregabalin and will even recommend iron infusions to get your serum ferritin above 100. He does telephone consultations. If you can afford it, pay to see him privately initially and then he'll transfer you to his NHS list. He will prescribe low dose opioids as well.C
Medical cannabis will also help during withdrawal so start applying now. It's not on NHS though. Cannabis was the only thing that got me through withdrawal.
It’s just infuriating isn’t it! I have already made an appointment to see the doctor on Monday as I have cut down too much too soon. I will start at reducing to 1.75mg and go from there I suppose.
You have ask your self how much does a local GP no about such a complicated subject if all he can do is give is another tablet that is not the answerI have paid a fortune to so called neurologists and to be honest I should have spent it on a holiday probly feel better
Be very careful coming of this durg I have been fighting for 2 years. With this and I am still on the durg the pain I get is so intensive it is un real America seems to have the answer but is it not just a marketing tool
Try and manage it your self that is what I have done yes I am not 100 % right but I get at least 5 nights proper sleep a week
On here every one has answer usually more drugs that is not the answer stress over weight and general health need addressing first
Sorry but this is my opinion don't want to a upset anyone it's the way I have coped with RLS
I have a suggestion for your daytime sleepiness. First are you taking clonazepam or another one like that. They can lead to daytime sleepiness. My suggestion is ritalin taken in the morning so it wears off before night. It is a stimulant.
I assume you have had your ferritin checked. If not see my reply above. You might want to ask your doctor for a low dose opioid. It will not only help you get off and stay off ropinirole but will do a very good job of controlling your symptoms. Some things that help some people include moderate exercise, weighted blankets, compression socks, botox, masturbation, magnesium glycinate, selenium, Dipyridamole, buspar, low oxalate diet, eliminating sugar, avoiding foods high in sodium and foods that cause inflammation selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, massage including a massage gun, yoga and red light therapy.
Thank you Sue, I am nervous about taking opioids as it is an unknown for me.
I will do some more research and give it consideration. I thought that maybe I would be able to very slowly reduce my dose of Ropinirole but the more I read and think about this, the less likely it seems.
I augmented on Ropinirole. Was on it for 16 years and was up to 8 mg a night. I’m off of it now. It was a long difficult process but worth it in the long run. Did anyone mention taking a low dose of an opioid to help get you through the process? They aren’t always easy to get prescribed though. I see you are considering HRT. My experience was that HRT exasperated my RLS. Best of luck to you.
You know I am just so worried about taking something else. I just want to try and reduce the dose to as low as possible, I am very worried I won’t be able to reduce it to as low as I would like. I’m not trying to put to much pressure on myself at the moment.
Hello Ms 21 years. I have had this crap for at least twice as long as you. If you have RLS , iron tablets will not get you where you want to go. I had severe augmentation. I found a provider that would listen. They got me off of Ropinirole. Weaned me off with Pregabalin and got me a iron Transfusion. I take 150mg of Pregab. My ferritin level is still at ~ 250.
IF YOU have RLS you need a high ferritin level. The iron tablets do not get you where you need to be. Trust me.
I won't say all your problems will go away, but you will be 500% better. I can sit and watch TV. My legs are not jumping all the time. Life is much better.
Don't no which planet you are but pain is extremely common with RLS that's why they prescribe opiate drugs for it comments like what you have been giving are not helpful or constructive
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