medication

[Mauritius-1960]

I have had RLS for years. I have been taking ropinorole for years and it helps me a lot. I emigrated to Mauritius and the medicine is not available here. they can't order it either. I can't survive without this medicine. I asked if they could send it, but that is prohibited. Does anyone have a solution?

[SueJohnson]

Ask if you can get pramipexole there. If so the equivalent to .25 mg of ropinirole would be half of a .125 tablet (or ,088 tablet if that is how they come there.

[Mauritius-1960 in reply to SueJohnson]

Thanks

[Madlegs1]

Ropinerol is a dopamine agonist medication. Inevitably, at some point in your future it will cause augmentation.( Check it out)

So this is an ideal opportunity for you to take the inevitable next step.

If you have any Rop still available, then reduce your intake by as small increments and as slowly as possible.

If you have no supplies, and can't get your hands on any other DA Such as mirapex or neupro, then find a doctor who can help you through the withdrawals. Clonidine can be a reasonable alternative.

Do read up any of Sue Johnson's replies to many posts here.

Looks like Mauritius is ahead of the game in banning DAs, or maybe there is another reason.

Odd--- because they are widely used for Parkinson's 🤔

Good luck.

[Mauritius-1960 in reply to Madlegs1]

Thanks

[SueJohnson]

If you can't get pramipexole see if levodopa/carbidopa (Sinemet, Rytaryi, Duopa) is available although that is less preferable as augmentation occurs in weeks to months so as soon as you are established on it at a dose that controls your symptoms, you should start to reduce and come off it since it will be easier before augmentation occurs. Ask your doctor or pharmacist for advice on how to do this and go slowly.

Less common DAs are: amantadine, Apomorphine (Apokyn), Bromocriptine (Parlodel), Cabergoline, DAR-0100A, Dexpramipexole, Dihydrexidine, Dihydroergocryptine, Ergoloid mesylate, Epicriptine, Fenoldopam, Ibopamine, Levodopa (L-Dopa), Lisuride Lumateperone, Metergoline, Quinagolide, Pergolide (Permax, Prascend), piribedil, Medopar (contains Levodopa and Benserazide), Sumanirole, terguride so you could ask about those too.

Assuming you can't get any of these and you do have ropinirole tablets left: 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 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(salt), foods that cause inflammation, foods high in glutamate, 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 (Epsom salts), vitamins B1, B3, B6, B12, D3, K2, 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.

Good luck. I hope you can get pramipexole or if not you have enough ropinirole left to slowly reduce and get off it.

In any case you will find lots of help, support and understanding here.

[Mauritius-1960 in reply to SueJohnson]

Thanks

[Mauritius-1960 in reply to SueJohnson]

Hi

Thank you for your detailed explanation. However, it is a lot of medicine that I could take instead of ropinorole. You say that pramipexole is preferred? The doctor here now gave me Cabalin 25 mg. I have to take 3 in 1 day because of my height. They say it also contains pramipexole. I also have a pasr weeks

I had my blood tested recently and the hemoglabin was 17.5. I don't know if that's the same as ferretin? I can send you my complete results because I...

I have no idea about it at all. My question is, is Cabalin good or should I really ask about pramipexole? And then stop taking ropinorole? I am difficult, but I can no longer see the forest for the trees

[SueJohnson in reply to Mauritius-1960]

Ropinirole and pramipexole are dopamine agonists. Cabalin is actually pregabalin. It is excellent for RLS but you would need to wean off ropinirole as I mentioned above. Do you have enough to do it? If you don't you will suffer. See my reply above.

I don't know why he said that about height as how much one takes has nothing to do with height.

No hemoglobin is not the same thing as ferritin. Most blood tests do not test for ferritin. I would ask for the full iron panel as I described above.

[Mauritius-1960 in reply to SueJohnson]

Thank you very much for all the help. So if I understand correctly, Cabalin is good. Yes, I don't really understand why he says I can have 3 because of my height. But 3 pieces of 25 mg is no problem? Do I need to reduce Ropinirole? That is no problem because I no longer have these and they are not available here in Mauritius. So now I have to make do with Cabalin alone. I take two after dinner and one just before bed. I will also ask my doctor to have my blood tested for ferritin. Thanks in advance for your help. I am now one step further

[SueJohnson in reply to Mauritius-1960]

Have you been off ropinirole for a few days then? Are your symptoms bad? If so you might ask for a low dose opioid temporarily to help. Emphasize temporarily and explain that you are suffering.

On the Cabalin you can take all 3 at the same time . It won't be fully effective for 3 weeks and also until your symptoms from stopping ropinirole abruptly have settled. After that increase it by 25 mg 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. Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg ."

[Mauritius-1960 in reply to SueJohnson]

I emigrated to Mauritius 1 year ago. I had taken Ropinirole with me for 1 year, but they are now gone, I have nothing left. I thought I would ask someone in the Netherlands if they wanted to send Ropinirole again, but these were intercepted at customs in Mauritius and destroyed because they are not allowed to send medicines. That's why I'm now without Ropinirole. The doctor in Mauritius now gave me Cabalin 25 mg 3 times in 1 day, but I am now lying in bed and my legs are still aching. It's really a big misery because it doesn't help

[ChrisColumbus]

"Certain medicines may not be available in Mauritius (including major brands readily available in the UK), and you may be prohibited from taking them into the country. "

I can't find a published list at present. Ask your local doctor and/or pharmacist about availability of dopamine agonists - e.g. ropinirole, pramipexole, rotigotine - and also gabapentin, pregabalin, low dose opioids. If you can't get an answer there check with the Ministry (don't know which of the 3 phone numbers is relevant), and come back here if you need advice on switching from ropinirole to something else

Ministry of Health and Quality of Life

Telephone number: 201-2175; 201-1927; 201-2596

Physical address

5th floor Emmanuel Anquetil Building Port Louis Mauritius

[Mauritius-1960 in reply to ChrisColumbus]

Thanks for helping

[Hitsy]

Hi there,

How long have you been taking ropinorole and what dosage? How well has it helped you?

Thanks

[Mauritius-1960 in reply to Hitsy]

Hi

I have 2 mg ropinorole. Sometimes 1 is enough, but sometimes I have to take 2. I've been using this for a very long time. I don't remember exactly how long, but certainly 20 years. When I read all the messages now, Ropinorol is not that good.

[Hitsy]

Hi

Thanks for your reply. A well known consultant has told me that up to 2mg would be ok in terms of augmentation. Which sounds like the case as you have been taking it for over 20 years without any issue. Wish you all the best in finding your meds. Thanks

[SueJohnson in reply to Hitsy]

Who was the well known consultant ?

Although Dr Early believes everyone will eventually suffer augmentation the usual thought is up to 70% so that can account for Mauritius-1960 not suffering augmentation.

[SueJohnson in reply to SueJohnson]

Never mind it was Dr Walker and he is wrong ,wrong, wrong!

[Mauritius-1960]

After days of having terrible nights because of my legs and walking around the house at night, I finally slept well yesterday. It is very difficult to get good medicines here in Mauritius. I am now taking Cabalin 75 mg. I can't get new ones until Tuesday. many pharmacies don't have it. I hope that the progress with Canalin will now continue and that I can sleep normally again and forget about the Ropinirole. will ask my doctor to have a blood test done. After a good night's sleep yesterday, I feel like I'm enjoying life again

[SueJohnson in reply to Mauritius-1960]

That's great. So pleased for you !

[Mauritius-1960 in reply to SueJohnson]

Yes, I am certainly happy and certainly with your help, although I do not yet understand everything about the medicines, what is good and bad, but what I do know now is that I should not use ropinirole but Canalin. Slept quite well last night too. When I lay in bed for a while, it started to get light again. I got out and put SENS on my legs for 30 minutes. That's one

device that I used to get for my back. It emits electric shocks. Now I use it for my legs. I don't know if this is a miracle cure, but it did provide relief. I do have an irritated palate in my mouth. I don't know if it is due to the Canalin medication. In any case, I am very happy with your help

[Mauritius-1960 in reply to Mauritius-1960]

but I am also a bit afraid that I will have to stop taking this medicine because there is some swelling in the back of my throat. I'll wait another day or I'll have to look for another medicine. I hope not

[SueJohnson in reply to Mauritius-1960]

Unfortunately that is probably an allergic reaction which means you might have to stop it. I would ask your doctor. I so ask your doctor if you get gabapentin there. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. 300 mg would be an equivalent amount to what you are taking but it is a low dose. Wait 3 weeks for it to have full effect and then increase it by 100 mg until you find the dose that works for you. 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. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason

If you can't get gabapentin or you find you are also allergic to it, then ask for a low dose opioid.

[Mauritius-1960]

thanks for your advice. I'm going to discuss it with the doctor