HRT and RLS: Hello everyone, Just... - Restless Legs Syn...

Restless Legs Syndrome

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HRT and RLS

21years profile image
4 Replies

Hello everyone,

Just wanted some advice please.

I have been able to reduce my dosage of Ropinirole to 1.5mg with the unexpected help of HRT.

I would like to reduce further and although I need to up the HRT dose, which may help. I am considering trying Magnesium.

Any advice would as always be gratefully received.

Thank you!

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21years
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SueJohnson profile image
SueJohnson

Congratulations for reducing your ropinirole. It's going to be harder as you approach the end. 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. 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. 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 of gabapentin or pregabalin 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) daily." If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. 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...

SueJohnson profile image
SueJohnson

Magnesium helps many, but until you are off ropinirole, it is not likely to help much if at all, but you can certainly try it. Magnesium glycinate seems to be the one most people use. Start with a small amount to see how well you tolerate it as it can cause stomach upset and diarrhea in some. If you take iron tablets take them 2 hours apart. Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, 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, 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

21years profile image
21years in reply to SueJohnson

Dear Sue,

Thank you for your detailed reply. I originally had an iron level of 12, I started taking iron supplements which I think helped. My iron levels then reached around 245 and I was told to come off of them. I haven’t felt any adverse affects from this but I understand it will take a while for the iron levels to deplete. This is something the doctor has advised me to check again in May.

Although I know Ropinirole and Pramipexole are not the answer I am concerned about reducing them completed with the help of opioids. I feel very nervous about new medications and how I can manage this and working full time too.

I suppose I am just hoping that I can reduce down to a lower dose and remain on that without any further augmentation. HRT certainly seems to have helped my symptoms too. Maybe I’m looking for an easier way out.

Jetto profile image
Jetto

Lyrica worked for me

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