Medication

[28Goodage]

I have had restless legs since childhood. Formally diagnosed with it in 2014 when I was diagnosed with Severe Sleep Apnea. I started with cpap treatment but didn’t want to take medication for RLS. By 2020 I had experienced an increase in the symptoms and my GP prescribed Ropinirole 1tablet at bedtime, which I now know was a mistake. It worked wonderfully for awhile but now the RLS symptoms have gone gotten worse. I tried gabapentin but it didn’t agree with me so I was put on pregabalin 100 mg tabs 3 times a day. That didn’t seem to help that much unless I still took the Ropinirole. Tramadol HCL 50 mg tablet was added just 3 weeks ago. I am also scheduled for testing for the NIDRA Therapy.

[SueJohnson]

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

If you are still on ropinirole you need to come off it.

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 if needed.

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. You can also increase your tramadol temporarily.

Dopamine agonists like ropinirole, pramipexole and requip are no longer the first line treatment for RLS. Gabapentin or pregabalin is.

The beginning dose is usually 75 mg pregabalin. You would normally start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your symptoms have settled which is why it isn't helping. 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. 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 200 to 300 mg pregabalin."

You don't need to take it 3 times a day. It is normally prescribed for neuropathic pain so that is the instructions on the prescribing guidelines but since RLS occurs at night that is when you take it.

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, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

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.

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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

[28Goodage in reply to SueJohnson]

Would an addiction counselor be better able to help with getting off Ropinirole? The neurologist wants me off of the Ropinirole but hasn’t given me any direction. My neurologist did not prescribe it, my GP did and since then I have a new GP. The new GP prescribed a medical marijuana card, which helps a little

. My ferritin level is 42. My doctor wants it above 75. She recommends that I keep taking my iron supplements. The total iron binding capacity is calculated at 369, unsaturated iron binding capacity is 261. The iron results are 108 the iron saturation with the Calcium TIBC was 29. I really don’t know what means.

Thank you for the support.

[SueJohnson in reply to 28Goodage]

No an addiction counselor wouldn't be better. They wouldn't know anything about RLS nor ropinirole.

What city and state do you live in? I may be able to give you the name of a knowledgeable doctor.

Your ferritin should be above 100 and some say 200. At 42, it is very low. Take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg 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 turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. Don't take your thyroid medicine within 4 hours.

If you can get an iron infusion, that would be best but most doctors won't prescribe them unless you are anemic, which you aren't.

It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

[28Goodage in reply to SueJohnson]

Thank you Sue. I have been taking my iron supplements. It is a ferrous sulfate with my magnesium supplements but I did not realize that they shouldn’t be taken together. I will also take two of them later in the day because it states they should be taken on an empty stomach. The capsules I take are slow release with vitamin C B12 and D3 added to them.

I also started with the tapering off of the Ropinirole. It was only last night, but it’s start. I cut the 100 mg tabs into quarters and took three of them. I am assuming that it will take at least two weeks before I can go from 3/4 down to 1/2 of a pill.

I am in the Albany, NY area.

Thank you again for the information and help.

[SueJohnson in reply to 28Goodage]

Don't take the slow release form of iron as it bypasses the area where it is absorbed. Some will be absorbed but most won't.

Since 1 mg tablets are all that you have it will be difficult to cut them equally in quarters. You can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it so you are reducing accurately..

Jennifer Durphy [phone] is a neurologist in Albany who after you see her the 1st time will do telehealth if you prefer. UsableThought uses her and finds her very knowledgeable.

[28Goodage in reply to SueJohnson]

My new neurologist is Dr. Durphy and she is the one that wants me off of ropinirole. Your reply confirms that I have made the right choice in Dr. Durphy.

I have had a couple of uncomfortable days and nights tapering off the medication.

Will start taking a regular iron supplement and a scale to help with the correct amount of ropinirole.

Thank you for all the information.

[SueJohnson]

The Escitalopram is known to make RLS worse. Safe anti-depressants are Wellbutrin and trazodone. Wellbutrin is slightly better for depression but trazodone helps with anxiety and insomnia.

Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium (or calcium rich foods), iron and magnesium (or magnesium rich foods). DAs like ropinirole inhibit TSH secretion so brings down thyroid hormones. Conditions associated with hypothyroidism (high TSH) can make RLS worse so want to bring it up. People with hypothyroidism may have prolonged and exaggerated responses to opioids.

[Rosyrestless1]

I've been using tramadol for 20yrs with good early success, less helpful the last few years but progression is always difficult. Everything that I have taken has lost usefulness over time. Tramadol can give good relief for years but everyone is different. In my case a strict sugarless diet is very helpful and spore based probiotics. I use ginger a lot. My rls is accompanied by small intestine bacterial overgrowth and gut health issues. When I control my gut I suffer much less.

[28Goodage in reply to Rosyrestless1]

Thank you Rosyrestless1.

This is the 3rd week I have been on tramadol. There hasn’t been a difference, but I have my fingers crossed. It probably has to build up in my system or I have to get off of Ropinirole before I will see a difference.

I also am trying my darndest to stay off as much sugar as I can. I did find out the hard way that ice cream desserts are not good.

[Rosyrestless1 in reply to 28Goodage]

It's basically a synthetic opioid so if it's not working, you might need something different. I noticed it immediately. Don't suffer too long waiting.