Weaning off Rotigotine 2mg patches.

[Klickatu]

I am keen to come off these patches because of moderate skin irritation and the fear of augmentation.My Sleep Physician has prescribed Gabapentin 300mg 3 times a day whilst tailing off the Rotigotine. How slowly should I tail off the Rotigotine, is it ok to cut the patches to reduce the dose?

[SueJohnson]

First off switch to regular ropinirole. To reduce using the patch you would have to cut a 1 mg patch into sixths which would be hard to do since a 1 mg patch is the equivalent to 1.5 mg of a ropinirole tablet. so you need 3 mg of ropinirole. Then 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.

On the gabapentin the beginning dose is usually 300 mg and normally you would 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. You do not need to take it 3 times a day. 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. 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." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin 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 .

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, 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.

[SueJohnson]

P.S. The reason your doctor prescribed it 3 times a day is that is the way it is prescribed for pain which is its primary use. It is prescribed for gabapentin off label. It is only needed at night because that is when we get RLS.

[Klickatu in reply to SueJohnson]

Wow! Lots to chew over Sue, are you a Sleep Physician? Sorry to have misled you, 300mg at night was prescribed by the Dr but the prescription note mistakenly said 3 times a day. I can only increase to 1200 because I am 76.I am on Rotigotine because Ropinerole caused nausea.

My Ferritin levels are good.

The only information I have been unable to get from Sleep Physicians is whether it is acceptable to cut my 2mg patches because the manufacturers don't recommend doing so.

[SueJohnson in reply to Klickatu]

No I am not a Sleep Physician. I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others.

You may not need more than 1200 mg but there is no reason to stop at 1200 mg if you need more except your doctor's lack of knowledge, There is nothing in the Mayo Algorithm that says you have to stop there. I am 83 years old and take 1500 mg and at one point was taking more.

Do you know what your ferritin number is? Doctors will tell you that it is fine, but what is fine for others is not fine for those of us with RLS.

It is perfectly acceptable to cut the patches. Many have done so on this forum. The only problem is that it is hard to cut 1 mg patches, which you would need, into six equal parts. Otherwise if you cut it into fourths you would be reducing by a larger amount which would make your withdrawal symptoms worse.

You can do that or you have 2 other choices. 1) You could switch to ropinirole and take an anti-nausea medicine. Kytril (Sustol, Granisetron, Sancuso), Anzemet (Dolasetron), Zofran (ondansetron) are some examples, or 2) You could directly switch to pramipexole from the patch. It is also a dopamine agonist. The equivalent amount would be six .088 mg tablets. Then reduce by one half of a ,088 tablet every 2 weeks or so.

Your choice.

[Corriemax]

I was on ropinrole and had lots of side effects. Now on 100mg of Gabapentin once in the eve before bed and doing fine. I would start low as you can with the dose and see how it goes

[Klickatu]

Thank you for your interest, I take statins, diuretics, alpha blockers and Candesartan for blood pressure.

[ChrisColumbus]

I can see that you've been on the forum for a while but that this is your first Post: there is a lot of great information and advice here.

Besides the good advice that you've already had and will have about switching from rotigotine to gabapentin, and about ferritin levels and other factors, the diuretic and the statin that you are taking *could* be exacerbating your RLS. Different people have different reactions to these medications.

They may or may not be a problem for you. Many take these medications with no significant ill-effects, and as you'll know they can be life-saving.

For me, statins made me extremely tired, gave me aches in my muscles and joints, and made my RLS awful after previously having it under control without using RLS medications. I discussed the situation with my NHS consultant and GP: the first reaction was that there was no effective alternative to the statin, but the NHS does recognise several and they eventually prescribed ezetimibe. This and other alternatives work in different ways and can be less effective/slower working than statins. However I now only have RLS symptoms very occasionally.

I must emphasise that the diuretic and statin may not be affecting your RLS, and even if they are you *must* discuss this with your medical advisors.

Good luck with your RLS and do Reply or Post again if you need further advice/info.

[SueJohnson]

Unfortunately all diuretics make RLS worse.

Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

For high blood pressure your Candesartan may be alright or may not. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....