Help please!

[Seahorse77]

I have had restless legs for many years. The 4mg of Ropinerole I have been taking for a long time has stopped working and my RLS is getting worse. Having joined the forum for the first time this evening, I read about Augmentation, I think that's what's happening to me and I need to start tapering my dose. I read somebody's post that said I need to change from my prolonged release tablets to the ordinary ones. Could you tell me why, please?

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Yep unfortunately you are suffering from augmentation and yes you do need to change from the prolonged release ones to the regular ones.

Then 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

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 as the peak plasma level is 2 hours. 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

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...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse

Many medicines and OTC supplements can make RLS worse. 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.

[Munroist in reply to SueJohnson]

Hi Sue, in the advice above you suggest reducing ropinirole by 25mg every two weeks, I assume you mean 0.25mg? Also you have the equivalence ratio of pregabalin to gabapentin as 1:4 in your examples (e.g. 100mg gabapentin = 25mg pregabalin) whereas the Mayo Algorithm and previous posts suggest a 1:6 ratio pregabalin to gabapentin.

[SueJohnson in reply to Munroist]

Good catch on the .25. The equivalence ratio is 1.6 if switching from one to the other, but there isn't a 50 mg nor 150 mg gabapentin.

[Munroist in reply to SueJohnson]

Ok thanks. I don’t want to seem picky but your advice is really great so it would be a shame if people got a bit confused.

[SueJohnson]

The reason you need to change is that Ropinirole ER (extended-release tablets) are formulated as a 3-layered tablet with a central, active-containing, slow-release layer, and two placebo outer layers acting as barrier layers that control the surface area available for drug release. They don't come in a 25 mg size and since you can't cut them, they are harder to come off of,

[Seahorse77 in reply to SueJohnson]

Thank you so much for your advice, Sue. i will ring the doctor tomorrow and get the Ropinirole changed.

[Seahorse77 in reply to Seahorse77]

My iron levels are fine. I take 50mg Sertraline and also thyroxine.

[SueJohnson in reply to Seahorse77]

Do you know what your ferritin number is? Doctors will say it is fine, but what is fine for others is now fine for those of us with RLS.

Sertraline is known to make RLS worse for most. If you are taking it for depression, there are only 2 that are safe for RLS - Wellbutrin and trazodone, Trazodone also treats anxiety and insomnia. Wellbutrin is harder to get in ther UK.

[Seahorse77 in reply to SueJohnson]

I don't know my Ferritin number - will find out. Thank you for your advice about Sertraline, which I take for anxiety. Thank you, Wideboy, also, for your supportive comments. The only thing I find that helps is propping up my legs on several pillows - try that!

[SueJohnson in reply to Seahorse77]

Buspar (buspirone) is also safe for anxiety.

[DesertOasis in reply to SueJohnson]

Sue, do you mean Trazodone? Not sure about Buspar. It’s a dopamine antagonist per this quote: “… and is a partial agonist for the serotonin 5-HT(1A) receptors as well as possessing low affinity and is an antagonist for the dopamine D(2) autoreceptors …”

[SueJohnson in reply to DesertOasis]

I already mentioned trazodone. I did mean buspar. See

pubmed.ncbi.nlm.nih.gov/368...

ncbi.nlm.nih.gov/books/NBK5...

[DesertOasis in reply to SueJohnson]

I don’t see Buspar in first article. Second one describes it but doesn’t say it’s RLS friendly

[SueJohnson in reply to DesertOasis]

In the first article it is listed under bupropion which is another name for buspar. I included the second article just to show it is used for anxiety.

[DesertOasis in reply to SueJohnson]

I think bupropion is Wellbutrin.

[SueJohnson in reply to DesertOasis]

You are absolutely right. I apparently confused the two when I put it in my notes awhile back. Thank you for catching it.

[Pippins2]

Please see the pinned posts to learn more about Augmentation

[WideBody]

I am sorry you are going through this, augmentation was the hardest part but it will get better.

It maybe hard to sleep for a while, I learned to do mindless things like cleaning in the middle of the night.

Trying to find what works is exhausting and frustrating. It does get easier. SueJohnson gave a great list of things to try. I’m pretty sure I tried them all and more.. Sometimes simple things like a sleep mask and comfortable ear plugs work wonders.

I hope you find some relief soon.

[Eryl]

Th use of dopamine antagonists does not solve the basic problem of why you need so much dopamine. I would suggest that you try to minimise your systemic inflammation as inflamed nerves are hypersensitive. Google 'foods that cause inflammation', the worst are refined carbohydrates and refined seed oils i.e. components of processed foods. youtu.be/WQNNfNIbfHw?si=jXv...(Not working as expected?)

[SwimLyn]

Message for Sue