Acrelane - nightmare

[ACRELANE]

Hi all

I used to send messages but stopped for a while. Now I’m back because this awful disease is driving me bonkers.

I was on pramipexole but stopped because having been on it for so long it was having an adverse effect. So I’ve had this dreadful thing since I was 18 and am now 75!

I am on targinact twice a day and also gabapentin twice a day and this in the “nth” combination that hasn’t worked! I don’t sleep and my legs kick out at night causing my partner to leave the bed regularly if I haven’t already got up! I can’t even sitbon the sofa at night as my legs start going soon after sitting. So I spend my life standing up or walking around. Now my daughter is starting symptoms and I dread the thought that she may get as bad as me. All I can do is keep living life the best I can and try and forget about something that I wish they could find a cure for! Personal moan over.

[ChrisColumbus]

I'm sorry to hear this. How much gabapentin and targinact are you taking and at what times of day? You may already be following Mayo Algorithm guidance:

"It is recommended to start treatment 1 to 2 hours before usual onset of symptoms....Most RLS patients require 1200 to 1800 mg of gabapentin daily, but doses up to 3600 mg daily can be used. Because of nonlinear kinetics and substantial interindividual variability, the gabapentin dose often does not always reflect serum level, especially at single doses above 600 mg. For this reason, multiple doses of gabapentin, spaced at least 2 hours apart, may be necessary to enhance absorption and efficacy."

[ACRELANE in reply to ChrisColumbus]

5mg of Targinact twice a day and 300mg of gabapentin twice a day.

[ChrisColumbus in reply to ACRELANE]

Apologies - I was adding Mayo recommendations on gabapentin to my Reply as you were answering. You'll note that you're still on a comparatively low dose at present.

[ChrisColumbus in reply to ACRELANE]

It's also possible that pregabalin or a low dose opioid such as buprenorphine may help you more. I'm tagging Joolsg and SueJohnson who will give you better advice

[ACRELANE in reply to ChrisColumbus]

Hi again. Tried pregabalin and it didn’t work. Targinact is an opioid and just upped the amount. Thank you for the suggestion. It seems I’ve tried most things over the years without any real relief.

[ChrisColumbus in reply to ACRELANE]

Targinact helps some, and some to an extent, but doesn't help others. Buprenorphine, if you can get it prescribed, has worked very well for some who found targinact of limited use. (And you're still on a lower than average effective dose of gabapentin...)

[SueJohnson]

To clarify what Chris told you: The gabapentin will take 3 weeks before it is fully effective. After that increase it by 100 mg 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.

If your symptoms start earlier you can change bedtime in my advice to the time they start. Once your symptoms are under control you may be able to just take it before bedtime as advised above.

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. As Chris said according to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason . 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 including in a multivitamin 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 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

5 mg targinact twice a day is just a starting dose. According to the Mayo Algorithm the usual effective dose is 10 to 30 mg, And twice a day may not be often enough as it only lasts 4 to 6 hours so can produce mini withdrawals.

Meanwhile 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, 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.

All of the above should be passed on to your daughter too.