Medication.

[Ginathedog]

Hi.

I am a 77 year old lady who has been suffering RLS for about 20 years. I was given Pramipexole by a Neurologist. I have been taking 180 microgram tablets three a night ( sometimes 4 a night) with mixed results for all those years. I have been unable to get Pramipexole for some time. My GP wrote to a Neurologist to ask what they would recommend instead. He said cut down gradually with Pramipexole and start 100 mg of Gabapentin twice daily and gradually increase. I was on gabapentin for years for pain from a spinal condition. 300 mg three times a day and had stopped taking them as I take Duloxotine for pain, and saw no reason to take both? I am really mixed up now as you can imagine as taking both Gapapentin and premipexole together did not always work for me, so how will Gapapentin on it’s own work? I would appreciate any advice you have for me please?

Roberta

[SueJohnson]

Duloxetine makes RLS worse for many and even when my RLS was completely controlled by gabapentin and my doctor prescribed Duloxetine, it sent my RLS through the roof. The reason your doctor told you to switch is 2 fold. First pramipexole is no longer the first line treatment for RLS. Gabapentin or pregabalin which is basically the same drug is. The reason is up to 70% of people on dopamine agonists like pramipexole and ropinirole will suffer from augmentation which believe me you don't want.

To come off pramipexole, reduce by .088 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. The gabapentin won't be fully effective until you are off pramipexole for several weeks. You can increase it to 300 mg twice daily but I would suggest waiting for at least 3 weeks after you start to increase it more since it would take that long to be fully effective if you had never been on pramipexole . After that increase it by 100 mg every couple of days until you find the dose that works for you for your pain and then probably you will need a larger dose for your RLS. For RLS take it 1-2 hours before bedtime and then whenever the doctor suggests for the second dose. 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. 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. If you take magnesium take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of it and if you take calcium don't take it within 2 hours. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin" your RLS. This is addition to what you need for your pain.

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. 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. Bringing it up to over 100 helps 60% of people with RLS and in some cases completely relieves their symptoms.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]

Meanwhile 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.

[Doings in reply to SueJohnson]

i was very interested to read your advice on foodstuffs causing rls inflammation, especially estrogen and collagen supplements,

I had been on hrt orally for many years then on patches for several years also taking collagen supplements, could these have excerbated rls ? If id known that id of stopped talking them straight away.

Im still on collagen but reducing off hrt as now im 71 and my new GP said at my age I shouldn’t be on hrt it would do more harm than good im not confident with her knowledge of hrt but am coming off as per her suggestion hoping rls might clear up !

[SueJohnson in reply to Doings]

They definitely could have.

[Joolsg]

It's encouraging to see a neurologist who is actually up to date on RLS.The best thing you can do is to get off Pramipexole.

You are on a very high dose and have been for a long time. Pramipexole actually increases the severity of RLS. That's why it is no longer prescribed by experts. It causes horrible suffering.

Gabapentin may well help you but it only works once you have been off Pramipexole for 3 to 4 weeks.

Follow Sue's reduction schedule and advice on raising iron and ferritin levels.

Once you are off Pramipexole, the RLS will be very bad for 3 to 4 weeks - classic withdrawal. Stick with it as your RLS WILL improve.

You can then increase Gabapentin up to 1800mg in 3 doses of 600mg 2 hours apart at Night only. RLS follows the dopamine cycle and is worse in the evening and at night. So take it in the evening only.

You will be so glad you got off Pramipexole when you see how much better your RLS is.