medications

[Iwanttosleep]

Hello everyone, so my body has been in augmentation and I was advised to stop taking Roprinirole for a month for my body to reset. I have had a rough 4 weeks with no meds at all. I went back to my doctor on Monday to say that I didn’t really want to go back on roprinirole in case the same happened again - I had previously been taking it for 10 months. After 5 chase up calls my answer today was that the only thing that they could offer me was lowest dose of roprinirole again and nothing else. I am taking magnesium glycinate and I want to start taking 14mg iron. I also take fluoxetine at night. I’m getting a bit confused - when are the best times to take all of these? Any advice would be most welcome xx

[SueJohnson]

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

Fluoxetine makes RLS worse. If you are taking it for depression ask for Wellbutrin or trazodone instead.

Do NOT go back on ropinirole. Have your doctor check the Nice Guidelines. Ropinirole is not the only drug but don't let him/her prescribe pramipexole (mirapex) nor the Neupro (rotigotine) patch as they are dopamine agonists too like ropinirole.

Ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. 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 to 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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 at Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask 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. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.

If your ferritin is less than 100 then you need to bring it up and 14 mg of iron won't help. 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 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. 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.

If your ferritin is less than 50 then take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate.

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.

It also sounds like you need a new doctor. If you tell me what city you live in, I may be able to give you the name of a knowledgeable doctor.

[Madlegs1]

Oh. G H U. 😤

[Joolsg]

Oh good god.The medical negligence in the UK is now out of hand.

Get a new doctor.

Sue this one.

I'll send you a private message about legal action.

First the doctor was appallingly negligent telling you to stop cold turkey.

Second- stopping Ropinirole and then restarting is criminally negligent advice!

Stay off the poison.

Look at RLS-UK website.

Get full iron panel blood tests and raise serum ferritin above 200ųg via pills/infusions.

Safely replace all trigger meds (anti depressants etc).

Start pregabalin or gabapentin as per RLS-UK website.

Tell us where you are and we can direct you to one of the handful of neurologists who know more than the basics.

[Niewiem]

14 mg of iron won.t cut it. My experience is i need 50-60 mg or it won.t make any diff. When. Ppl evening on empty stomach every sec.day. myself every evening no matter empty stomach or not. augmentation is terrible maybe try gabapantion or ldn