Neuro appointment today!

[Standing123]

I’ve had RLS for 44 years, I’ve been on Rop for years but now augmenting!

Could you please share what questions I should be asking?

I don’t really want to go on to another D-A drug!

thanks in advance.

[SueJohnson]

Definitely don't go on another DA drug. First off check if you are on the slow release ropinirole (pramipexole). 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.

Ask for a low dose opioid not only to help you come off the ropinirole but to continue taking afterwards to control your RLS since you couldn't take gabapentin. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.If your doctor won't consider long term use at least ask for it temporarily to help your withdrawal. Print out and show her the appropriate section of the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment at Https://mayoclinicproceedings.org/a...

If s/he won't consider an opioid for long term treatment another one to try is dipyridamole. This would be after you are off ropinirole . You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days.

On your iron if you can't get an infusion: 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. Take your iron 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.

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.

[Standing123 in reply to SueJohnson]

Thank you for all your advice.

Just finished appointment.

Suggested walking!!

Come off Rop and go on to Gabapentin.

I’m not sure if this is the best advice.

Also advised another blood test to check ferritin, recommended getting to the range of 100-150.

Wouldn’t entertain an infusion.

so really, no further ahead. 🤦🏼‍♀️

[SueJohnson in reply to Standing123]

If you can afford it you can get a private infusion for £800. I don't know where you live but you can get one at the Iron Clinic in Harley Street in London or in Manchester. The Royal Cornwall Hospital in Truro (SW England) has given infusions for RLS.

Where do you live? I might be able to give you the name of a doctor that will prescribe opioids. I assume you asked about this.

[Standing123 in reply to SueJohnson]

I live in Hampshire UK

Thank you.

[SueJohnson in reply to Standing123]

Unfortunately the closest doctors I have are in London although they may do telehealth after the first visit. If interested Joolsg can advise you which one is best.

[Joolsg in reply to Standing123]

How did the consultant advise you to do that? RLS-UK has a printable withdrawal schedule under 'useful resources'. It sets out how to withdraw safely. Send it to the consultant. There's also a printable sheet on iron therapy.Gabapentin is next line treatment.

Wait for your blood results and you can arrange a private transfusion at the Iron Clinic in Harley Street, if you don't want to wait months for levels to rise.

And of course. You can always try taking ferrous bisglycinate every night before bed to see if it helps.

[Joolsg in reply to Standing123]

And it isn't the best advice. Walking in moderation is fine if done earlier in day. Weight bearing exercise, like gentle weigh lifting, earlier in the day, is beyter for RLS as muscle stores dopamine and we lose muscle as we age.But at least the doctor didn't insist on another DA.

Start the gabapentin slowly, according to the RLS-UK schedule in treatments. It takes 3 weeks to be fully effective. But don't go above 900mg until you're off Ropinirole completely, because withdrawal symptoms are brutal and will override the gabapentin.

Did he offer low dose opioid to help you through withdrawal?

Follow SueJohnson schedule and take the gabapentin at night only, in split doses not exceeding 600mg 2 hours apart. So work up to 300mg at, say 8.30pm and 600mg at 10.30pm. Then when you have dropped the last dose of Ropinirole, you can increase to 1200mg.

During withdrawal, ask your GP to prescribe either 30mg codeine, 50mg tramadol or 10mg oxycodone to settle the severe withdrawal you will experience. Show them RLS-UK website, useful resources .

Go slowly. Good luck.

[violetta254 in reply to Standing123]

You probably won't get to 100-150 on your ferritin with oral meds. As it raises the ferritin, it becomes less effective the higher your ferritin becomes. An infusion is really the only way to get there. Please check Dr. Early's advice on iron on the RLS website for more info on infusion. Perhaps you can convince your doctor.

[Standing123]

he suggested running the two side by side and reducing the rip.

Just read the Gabapentin side effects… how common are these?

[SueJohnson in reply to Standing123]

Most will resolve in the first few weeks. Some people have none or at least those they can live with. A few have more. Some find that switching to pregabalin takes care of ones they can't live with. The nice thing about those two medicines is it is easy to come off them by slowly reducing them if you need to.

[restlessstoz in reply to Standing123]

It depends how well you tolerate medications partly. I have been on as much as 3,000 mg of Gabapentin in the past and suffered no side effects, even at first. The only real way to tell is to try it yourself. s

[violetta254]

I had long lasting side effects to gabapentin, including mood swings and anxiety that did not resolve. It lifted immediately with quitting the drug. This is not always a harmless drug. I would never take it again. Lyrica was no better. Many do well on it but not me.

[amrob123 in reply to violetta254]

Yes, i had a lot of sedation when i started pregabalin which lessened in time, however i developed a whole host of other undesirable side effects while on pregabalin. Ours isn't an atypical experience.