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Autoimmune disease

Mixed connective tissue disease and renal impairment

4 replies

Lonecatwithkitten · 11/10/2020 10:05

I have mixed connective tissue disease ( along with fibromyalgia, pernicious anaemia and vitelligo).
Generally I have been quite well for the last four years, needed to add in Gabapentin last year, but generally okay.
The last two months I have felt terrible the tiredness and some hyperaesthesia too.
Finally got bloods on Friday and my results get uploaded on patient access so I can view them. My Urea has always been stable for years mid normal and suddenly it has leapt and is high, creatinine is top end of normal and my GFR is normal currently. So this stages me at Stage 1 CKD - I know CKD can be a consequence of MCTD, but it is uncommon.
Just terrified and it's a weekend. I will of course ring rhematology on Monday and see where we go from here. But I understand this massively changes my Covid risk too from very low to quite significant.

OP posts:
FuzzyPuffling · 13/10/2020 18:01

Hello Lonecat
I have lupus and CKD (Stage 3), so similar but not the same as you. My rheumatologist is unwilling and/or unable to connect the two up and has said the treatment would be the same regardless of the cause. (ie none!)

No one has mentioned higher covid risk to me...I get my flu jab and am not in the shielding group.

I try to drink plenty of water, but not stupid amounts but that's all I do. I've been steady at this level for at least 2 years. I had a massive panic when I was diagnosed - it can feel like a terrifying prospect, but for some people it holds steady for years.

FuzzyPuffling · 13/10/2020 18:03

Oh and don't take NSAIDs.

Lonecatwithkitten · 13/10/2020 21:10

@FuzzyPuffling as understand it it is a consequence in about 10% of MCTD cases and that I need ACE inhibitors, ARBs, beta blockers or statins ( I would prefer ARBs) and that I need my hydroxycholoroquinine swapped out for one of the more heavy duty immunosuppressives like cyclosporin or methotrexate. My rheumatologist has also told me that renal failure was a possible consequence.

OP posts:
FuzzyPuffling · 14/10/2020 17:12

I've tried 3 out of 4 of the drugs you mention. Don't take anything now and I'm still alive and kicking!

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