Should I change medication

[SimonMorriss]

Hi All

I have been suffering from RLS for over 15 years now and I am very lucky that it's under control and does not cause me any significant problems.

When this started I was put on to 0.25mg of Ropinerole and about 7 years ago this was increased to 0.5mg. Still a very low dose.

I'm starting to feel that this level of medication is not working as well as it could and the last time this happened the dose was increased to 0.5mg. I don't get a full nights sleep and am getting up at least once or twice a night.

My question and request for advice is, is it safe to increase and if not should I change?

If the recommendation is to change what advice would you give.

Thanks in advance.

Simon

[SueJohnson]

You are suffering from augmentation and need to come off it. The signs of augmentation are when you have to keep increasing your dose to get relief, or 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. To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. Also 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 (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). 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 (25 mg pregabalin) 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. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin or pregabalin 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 (200 to 300 mg pregabalin) daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Check out 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 or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

[Taz66]

I take 6mg daily n its still not working properly also i got it in my arms.🙄

[SueJohnson in reply to Taz66]

4 mg is the maximum amount. You are obviously augmenting. See my reply above.

[DicCarlson in reply to Taz66]

That is true augmentation! There is no good outcome without getting off it. Heed Sue's advice above and see other posts about augmentation. It is so paradoxical that the very drug meant to assuage the condition is actually enhancing it's ill effects.

[Joolsg in reply to Taz66]

See the pinned post on augmentation. Augmentation means increase in severity of RLS. As it's moved to arms you need to follow Sue's advice and get off it by slowly.

[Joolsg]

I agree with the others. Best to reduce now. Make sure you raise iron and ferritin levels.

[Rezcat11]

Dopamine agonists such as Requip are the devil, at least for me and for the 70% of patients who develop augmentation. Moreover, as the dosage increases so does the liklihood of Impulse Control Disorder [ICD], devlopment of potentially disasterous obsessive compulsive behaviors - such as out of control gambling, eating, spending, promiscuity, etc. This is now well documented, not a joke. Common results include divorce, obesity, bankruptacy, foreclosure, STIs, and/or homelessness.

Finally, each increase in dosage just makes it harder to finally get off of the drug because it increases the liklihod and degree of severity of DAWS [Dopamine Agonist Withdrawal Syndrome], which is hell unless you enjoy not sleeping for three days at a time and uncontrollable rages. Taz66 is at 6mg, which as Sue Johnson notes above is 2 mg above the maximum dose. It took me 3 YEARS to taper off of 6mg and I could not get below 1.5 mg without the support of prescribed opioids.

You may think I am exaggerating; I only wish I was.

Best of luck to you.

[SimonMorriss]

Thanks everyone.

As I'm on a low dose why can't i just stop the ropinerol and jump stright onto the new medication.

Thanks