MCTD and The Liver: Hi My husband has had MCTD for over... - NRAS

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MCTD and The Liver

Pop007 profile image
6 Replies

Hi

My husband has had MCTD for over 20 years, it has become progressively worse.

6 months ago he suffered acute liver failure, caused by an iron infusion. ( low iron due to blood lose following operation).

Lucky he survived this but was taken off most of his joint medication, as they affect the liver.

He suffers from raynaulds also and at the moment he’s practically house bound. He’s seized up!

He seems to be pushed from ‘pillar to post’ ( slowly- takes weeks to get an appointment) between Rheumatology, GP and Gastroenterology. One suggests a drug and then the other disagrees. Wish I could get them in a room together. They appear to communicate via snail mail.

Has anyone come across a drug that doesn’t impact on the liver?

He was supposed to start azathioprine this week but just been told no...

In the past he’s taken methotrexate, mycophenolate amongst others...

any ideas?

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Pop007
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6 Replies
helixhelix profile image
helixhelix

Look up low dose naltraxone, LDN. Search box top right

Pop007 profile image
Pop007 in reply to helixhelix

Thanks, I’ll have a read!

medway-lady profile image
medway-lady

This is a problem no one on here can resolve as we are not medically qualified. If it helps I have kidney failure from Omeprzole and on transplant list would I take advice from a social media page or Dr Google well No. It might seem like that is hard and I don't mean too be but we are all different and it would be so easy to make things much worse. I wish him well its a shock, and really even an OTC item can do incredable damage so I'd not take anything without your Consultants knowledge. Please do contact the hospital asap as I've had no problem getting to see anyone. Ask to be present when they get together to discuss the case I did and not a problem. Talk to your RA specilaist nurse might be a help and I wish him well.

Pop007 profile image
Pop007 in reply to medway-lady

Thanks for the reply. He wouldn’t take anything without asking the hospital. The docs just seem unable to help... just wondered if there was anything anyone had been prescribed that helped. I really need to lock both the Rheumatologist and Gastroenterologist in the same room.... one suggests something and the other says no , it’s been back and forwards like this for months...

katfisher profile image
katfisher

I have class 3 rheumatoid arthritis and have tried multiple medications I am currently on a biologic injection Actemra , when I took methotrexate I had severe hair loss and it brought Psoriasis to the fore front or gave it to me. I had pustular psoriasis the worst kind! I went off all medications except for Actemra. I still have residual pain but have accepted it and take Aleve.

dbestdeb profile image
dbestdeb

Not sure why they said no to azothioprine. It is the only drug that seems to help my liver. Best wishes to him.

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