Hi my aHUS just grumbles.
Hi just grumbles you say.
Yes it like smoulders not going out, then bubbles up , Been going on a while maybe many months probably years until it got diagnosed.
And even though it hasn’t been sudden or catastrophic your doctors say you have aHUS.
Yes that is what they diagnosed.
How did they know?
Because my kidneys are in subtle decline.
But you would have low platelets and high LDH they would be indicative.
No platelets are maybe a little below normal maybe a little high LDH.
Enough to have a kidney biopsy?
They were so puzzled they did one and found no schistocytes?
No evidence of an acute TMA , but that can happen to others. Some unusual signs though to suggest a chronic TMA.
Yes
Any complement genetic testing?
Yes no mutations found but some CFHR 1-3 deletions they said. Dont know what that means.
And what brings it on?
Dont know really I get infections like everybody does, Mainly ear and chest infections. It may be something autoimmune. I have heard some have chronic hypertension.
If autoimmune maybe something like rituximab could abate it. Any other signs or symptoms?
Not really it just seems to be about my kidneys. I sometimes feel tired and get a headache.
Dont we all.
I do feel sometimes that it is worse than other times as though I am flaring. But it is not like others get.
Do you get complement inhibitor treatment at all.
No sometimes doctors think I should be then it seems that there is not enough justification for it to be funded. I hear some people do.
So there are others the same as yoi.
Yes but not many heard of so we are rare within a disease that is already extremely rare. There are same case studies I know of. Not many like the many for catastrophic aHUS. Maybe some people don’t know they have it.
Maybe. It seems to be the same disease but manifest differently to most aHUS patients. Or maybe if its prevalence was truly known catastrophic aHUS is a rare form of grumbling aHUS. Who knows?
Article No. 808
