Weight gain and Ropinirole

[Chocolatelover1211]

I’m not sure yet. I haven’t been to the doctor. I’ve gained 20lbs in 4 1/2 months. I haven’t weighed myself since my last visit to the doctor at the end of February. I knew I had gained weight because I was starting to feel uncomfortable and my pants were getting tight at the waist. But what a shock! I’ve been taking Ropinirole since the beginning of February and was wondering if anyone else had gained significant weight in a short period of time.

[SueJohnson]

That can be a side effect of ropinirole. All the more reason to get off it.

[SueJohnson]

First off check if you are on the slow release ropinirole . The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.

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 or you may be able to reduce more quickly. 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 and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. Pregabalin is more expensive than gabapentin in the US. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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? This is the first thing that should be done for RLS. 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 including in a multivitamin 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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, C, 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.

[Chocolatelover1211 in reply to SueJohnson]

Thank you very much for the comprehensive overview. I am taking lamotrigine, buspirone and caplyta.

[SueJohnson in reply to Chocolatelover1211]

Lamotrigine and buspirone are fine. Lamotrigine may even help RLS.

Caplyta is a dopamine antagonist that makes RLS worse for most, Safe similar drugs are Geodon (Ziprasidone) divalproex sodium (Sodium valproate, Depakote, Depakene, Valproic Acid) which may help RLS, carbamazepine (Tegretol, Equetro, Epitol) although this is less recommended if you take gabapentin. Discuss these with your doctor.

[Joolsg]

I'm shocked that doctors are still prescribing Ropinirole. It's no longer first line treatment and the new American Academy of Sleep guidance will relegate it to 'end of life scenarios'.It WILL cause RLS to worsen severely (augmentation).

Doctors should test for iron levels first and review and safely replace trigger meds ( anti depressants, anti psychotics, sedating anti histamines, statins, beta blockers, PPIs).If raising serum ferritin above 200ųg/L & replacing trigger meds doesn't help, then first line meds are gabapentinoids.

Follow SueJohnson advice and get off Ropinirole now, before your body gets used to it.

Ask for full iron panel bloods and raise levels with iron pills every other day OR an iron infusion. Discuss your anti psychotic med, as that will cause/worsen RLS. There may be safer alternatives.

The weight gain is caused by Ropinirole. The drug itself causes increased eating AND it can cause Impulse Control Disorder, including binge eating.

[Cataanddogs]

I've been on them for years love and I ain't gained any weight.

[Faith_Hope_1 in reply to Cataanddogs]

What dose do you take? Have you ever had to increase it?

[Legquake]

I gained weight as well and it isn't easy to lose. In fact, it's almost impossible. I put on 20 lbs.

I haven't changed to Gabapentin and won't until Ropinirole stops working. I had an EMG test performed and also had my iron checked through a doctor at Mayo. Both were fine. Despite new guidance, he left me on Ropinirole since it's working and will change it once it stops.

[SueJohnson in reply to Legquake]

How much are you taking?

[ItsBarrett in reply to SueJohnson]

.5 in the morning, .5 at 5:00 pm and 1.5 before bed.

[SueJohnson in reply to ItsBarrett]

Have you considered coming off it? Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and 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 nor might iron. And one expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.Https://mayoclinicproceedings.org/a...

[Chocolatelover1211 in reply to SueJohnson]

What exactly is augmentation?

[SueJohnson in reply to Chocolatelover1211]

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.

[Chocolatelover1211 in reply to SueJohnson]

what kind of iron and magnesium? I looked into them on Amazon and there are different types.

[SueJohnson in reply to Chocolatelover1211]

If your ferritin is below 100 :

If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also 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. 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.

Magnesium glycinate.

[birdman74]

Chocolatelover1211 - I took Ropinarole for four years and as far as I can remember there were no side affects at all. I changed to Mirapex because it was thought that Mirapex was going to do more good. I am currently on Neupro patches plus Pregabalin. Good luck.

[jollyjune]

No I have not noticed any weight gain from taking Ropinirol

[Jaxy1]

Yes most definitely....4lb per tablet approx and started almost immediately I started taking them. I weaned myself off last year and the weight is very slowly reducing.