Haemachromatosis and iron in RLS

[RSL-RIP]

Husband with chronic and often terrible restless leg symptoms- but also (like others in his family line) has the Haemachromatosis gene. Cant see how he could ever use an iron based therapy. Wonder if there are other people with experience of this ?

[Madlegs1]

Only about 50% of sufferers get benefit from raising ferritin levels.

I had ferritin of 1500 and it had no effect on my RLS.

So you will have to look at other ways to help.

Good luck.

[ChrisColumbus]

Firstly, is your husband still on pramipexole (Sifrol) where he would almost certainly be suffering from augmentation - where the drug no longer helps and indeed makes things worse? If not, what medication is he on now?

Secondly, have you been through any other prescription or OTC medications that he's on and checked which could be triggering or exacerbating RLS, as many do?

Thirdly, as Madlegs says not everyone benefits from raising ferritin anyway - but what were the serum ferritin and transferrin saturation numbers in his most recent blood test? (I believe that he should be having regular monitoring blood tests). If the numbers are low you may need advice from a haematologist or perhaps from haemochromatosis.org.uk/ (or Australian equivalent) as to whether he could safely raise his numbers.

[RSL-RIP in reply to ChrisColumbus]

Thank you Chris. He is monitored re iron and not low levels. On Sifrol. I just wondered how someone with the H gene pic would be able to use iron infusions. In any case, as many note here- doesn't help everyone anyway.

[SueJohnson in reply to RSL-RIP]

Sifrol is no longer the first line treatment for RLS because up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me he doesn't want because it can be hell to come off it and the longer he is on it, the harder it will be to come off it and the more likely his dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work. And one expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...

So it is important that he be aware of the signs of augmentation which are when one has to keep increasing their dose to get relief, or when their symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of their symptoms worsen.

The acceptable maximum of Sifrol is 0.5 mg so he should never go above that.

[SueJohnson]

Has he actually been diagnosed with Haemachromatosis by having a full panel iron test to determine his ferritin and TSAT? if not he should stop taking any iron supplements including in a multivitamin 48 hours before the test, not eat a heavy meat meal the night before and fast after midnight. He should have his test in the morning before 9 am if possible. When he gets the results, he should ask for his ferritin and transferrin saturation (TSAT) numbers.

[SueJohnson]

As Chris asks, what medication is he on now? And what has he tried and what was his experience on them. We can probably help if we know.

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.

[RSL-RIP in reply to SueJohnson]

Whew- big lists, Sue! Thank you very much . His situation is not new (decades) and we have tried most things and explored lots of tests and strategies etc. Over the course of a week, he feels he gets enough sleep- even if it takes hours , and a number of gallops around the streets, to get there. I was just curious about the iron experience of people here. He - and many in his family- have the Haem gene. Iron is monitored.