RLS and Haemochromatosis

[OpenMic]

Hi all,

I have RLS but also gave been diagnosed with Haemochromatosis and have the genetic mutation for this condition. The latter results in increased concentration of iron in the body which can damage kidney and liver etc. I was having 500ml blood removed every two weeks to reduce iron levels and this has been successful with ferritin down to 37. Low iron in CNS though is responsible for RLS and I see that people in my situation can have high iron in the body but poor absorption into CNS because of another genetic mutation. Anyone else in this situation?

[rchobby]

Yes, my husband is in the same predicament, also has Haemochromatosis but besides that we can no longer get Temgesic in South Africa and the BP patch (20) is not working. we are at our wits end. My husband is so tired and body sore from all night pacing.

[RCHD in reply to rchobby]

He can’t get low dose methadone?

[rchobby in reply to RCHD]

No unfortunately not available in South Africa!

[Jelbea in reply to rchobby]

There was a member on this site who lives in South Africa and she was on methadone.

[rchobby in reply to Jelbea]

Thanks Jelbea, I will ask our pharmacist . Our GP was convinced it was not available here so wouldn't give me a script for methadone !!

[Edward567 in reply to rchobby]

I have RLS and haemachromatosis. I take 4 Pramipexole. No stimulants, no alcohol, no caffeine. I use decaffeinated tea . So far ok.

[LotteM]

I think Madlegs is in the same boat. I am sure he will come around shortly.

[Edward567]

Hi, yes, I have haemachromatosis and started venesection four years ago. Ferritin level stable at present. Weird isn’t it? Everyone else needs iron!