I came across this group by sheer accident I wasn’t looking for advice re the medication I was taking but after reading the posts I’m now worried about it all.
I was on 0.5mg Advartel Ropinerole (which was working absolutely fine for me, honestly gave me my life back after 10 years of not knowing what I was experiencing at night!! but due to uk shortages I was prescribed 0.88 pramipexole, this didn’t work as well and the tiredness I experienced with it is off the scale. I now have my Ropinerole prescription back so I have switched back all stems to be ok except I now feel a bit sick before bed. I also take cocodomol 2 x 30/500 with my Ropinerole before my period is due as this seems to make my RLS worse and doctor advised this rather than upping my dosage of Ropinerole. I face no issues with this either, sometimes a bit groggy the next day. But would you agree with this?
Also is my dosage of Ropinerole considered low, and if I am having no issues with augmentation etc should I just continue or do you advise I try to come off now before it gets harder if dosage needs to increase.
I also take, iron, magnesium supplements daily and my ferritin levels are 93.
Thanks so much!
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Apricottoby
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It's a tough decision.Most people on this site have been through augmentation and brutal withdrawal. So you will find that most people tend to be very anti dopamine agonists.
The good news is that your doctor seems to be a good one and knows not to increase the dose of Ropinirole. Never increase the dose and watch out for over eating or over spending, which are signs of Impulse Control Disorder.
Keeping serum ferritin above 100, preferably 200 can help stop augmentation developing.
Read the RLS UK website on augmentation so you recognise the signs and the Mayo Clinic Algorithm, which is the latest and best treatment advice for RLS.
You may avoid augmentation by keeping to 0.5mg and ensuring your serum ferritin is above 100, 200. You can take ferrous bisglycinate every night as long as your transferrin percentage is below 48.
You could stay on Ropinirole and review your symptoms monthly to ensure drug induced worsening hasn't started, OR you could slowly reduce now and consider switching to pregabalin, taken at night only.
It's easier to go through withdrawal when you're young and fit.
Spend a few hours reading everything you can on this site and on the website and the Mayo algorithm. The more you know, the better treatment you'll receive because RLS isn't taught at ANY stage in medical training.
Excellent and balanced advice from Joolsg. It is a tough decision. Is your RLS daily and severe enough to warrant taking the ropinerole daily? Generally, medicines are not prescribed on an as needed basis, but if it is possible not to take t he ropinerole now and then, the chance of augmentation may be lower. No one knows. Most experiences here are from people that were on high and/or escalating doses. The main thing is NOT to increase tue dose. Adding the occasional cocodamol, as your doctor advised, seems indeed wiser.
Yes your dose is low. 4 mg is the maximum amount. Taking co-codamol with it is fine. Up to 70% of people on it will suffer augmentation and the risk increases about 8% a year. The longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work. However that also means 30% do not suffer from augmentation.
If you need to increase the dose, that means you are suffering from augmentation and I notice that just 4 days ago you were only on .25 mg. The other signs are when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
How long have you been on it? If it is fairly recent then increasing it from .25 to .5mg might not be significant but if it is not then you are already suffering from augmentation and need to come off it.
If not, It is up to you to decide whether you want to come off it now or not.
I see you have already seen my post about things that help or hurt RLS. Are you taking any other medicines or OTC supplements. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
On your iron, you may have seen my advice on it but just in case you didn't: Take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout, don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
And check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.Https://mayoclinicproceedings.org/a...
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Doctor correct or gaslighting me?
OFF ROPIBEROLE AT LAST
RLS what works and doesn\"t work for me
New here, but not to RLS
It worked for me, so I'll try to tell you all about it again.
