duel diagnoses Lupus SLE and Hemochromatosis

[Moxie5]

Anyone else on here have Lupus SLE and

Hemochromatosis.

[MrsMarigold]

Hi Moxie

healthunlocked.com/haemochr...

I found this on hu site. I do not have that but I do have Lupus SLE and one there stuff.

Maybe someone will jump in here. Best wishes MrsMarigold

[MEGS53]

Hi and welcome 💖

Do you have a genetic mutation linked to the haemochromatosis?

[Moxie5 in reply to MEGS53]

Yes , I got one bad gene from my father and a different bad gene from my mother both who are carriers of Hemochromatosis .

[MEGS53 in reply to Moxie5]

Ah, you certainly weren’t lucky when genes were handed out 😟😟😟

Do you have blood removed regularly to lessen your iron load?

I don’t think there’s a link between lupus and haemochromatosis at the genetic level, at least. 🤷‍♀️🤷‍♀️🤷‍♀️

Take care xxx

[Mya12king]

Hi Moxie5I have Lupus SLE and questionable Haemachromatosis.

My ferritin levels are high and remain so after 3 consecutive blood tests.

I have been referred to Haematology as my grandparents on my mother's side both had Haemochromotosis my grandma being a carrier.

Their bloods were said to be incompatible hence my mum had a rare blood group, one of her brothers died from kidney complications with blood and her other brother has haemochromatosis.

I am waiting for a decision as to what action is to be taken either through Haematology or through the doctors.

I will let you know when I hear anything.

Hope you are ok, please keep me informed .

[Moxie5 in reply to Mya12king]

I in the beginning had to phlebotomize every month for about 6-8 months then about every 3-4 months now down to once or twice a year ever since I went anemic back in 2018 took my body about two years to start overloading again . It happened cause I moved to a different part of the US (Washington)state and had crappy Doctors I am now with a really good Doctor and hopefully will be monitored better . What are your symptoms besides the bloodwork? Arthritis,stomach hurting,fatigue? Just trying to see what other people are seeing in the changes in their bodies

[Mya12king in reply to Moxie5]

I have a lot of stomach upsets, acidity, wind and intolerance to some foods e.g. tomato, onion, spices.I have Rheumatoid arthritis for which I take the immunosuppresent Azathioprine.

I do get tired especially towards the end of the day and have noted over the past 2 years that I get quite low periodically and then I pick up again without having changed anything.

I am a positive thinker and do oilates twice a week as well as walking everyday.

It is good to hear your journey and it gives me some idea of what I might have to deal with. Its good to hear you now have a good doctor - it makes such a big difference.

I will let you know how I get on when I get an appointment date with haematology.

[Moxie5 in reply to Mya12king]

I also have Lupus SLE diagnosed in 1995