C3 and C4

[Claricemary]

Hi. How fast do your c3 and c4 complements grow? Have these values gone to normal for you and how long did that Take? Thank you.

[EOLHPC]

Mine were both well below normal ref range before (re) diagnosis in 2011.

- as soon as i started daily hydroxy in 2011 my C3 raised into normal but “only just”, and it didn’t improve further when prednisolone & mycophenolate were added into my daily combined therapy treatment plan around 2014

- My C4 has remained at the same below normal levels

Interesting question! Why do you ask? Are your levels staying super low?

🍀🍀🍀🍀 Coco

PS here’s a link to my fav NHS reference on this:

southtees.nhs.uk/services/p...

“...in some long standing SLE patients C3 levels remain low, which does not necessarily denote active disease, a sudden fall in levels does usually indicate exacerbation of disease activity and a risk of renal damage.”

[Claricemary in reply to EOLHPC]

Thank you so much for your answer. Yes, mine are low and remained that way for a long time but, fortunately, I am fine and that is the only problem with these values and I just didn’t understand if the treatment was the problem for them not raising or if this could just happen and not mean anything is not going right. Thank you again.

[EOLHPC in reply to Claricemary]

You’re v welcome! I’m glad you brought this up. There are others here with chronic complement deficiency...i hope someone spots your post!

I’m no expert, but my lupus was infant onset and diagnosed in 1954...and went without daily therapeutic systemic meds until 2010... because i’m seroneg and diagnosed with a simultaneous Primary Immunodeficiency Disease, AND because my low C3+4 were key to my lupus rediagnosis in 2011, i’ve been guessing that decades of active inflammatory process had so depleted my complements that they could never recover...but my daily meds have at least relatively stabilised them. If i EVER have time in rheumatology or immunology clinic, i’ll try to get answers on this....will you ask your consultants?

[Claricemary in reply to EOLHPC]

Thank you again for your support and sharing your story. I honestly didn’t know about this Primary I. disease. I will ask my consultants. I tried this once, asking about C3 and C4,but the answer wasn’t very clear and I tought it was about the medications or the dose taken.

[EOLHPC in reply to Claricemary]

Hope their answers help! Complement deficiency seems to be one of THE most rare versions of Immunodeficiency, so your consultants could vvvvv possibly be totally unaware it exists AND that any patient can have any primary immunodeficiency, let alone a primary complement deficiency, simultaneously with lupus! So please don’t be surprised if your consultants look at you blankly. This combo of illnesses IS rare

My feeling is that your sort of complement deficiency is more likely the type that is characteristic of MANY lupus patients, as that link & quote i gave you above seem to be saying. So please resist any temptatiins to worry.

The only reason i even know about this is cause i’m one of these v unusual lupus patients who is also managing a primary immunodeficiency disease.....and anything i know about primary complement deficiency it is thanks to one of our leading fellow wonderful forum members who is like me is in tertiary care, and has attended the same brilliant immunology & rheumatology clinics I do.

This PID UK support group has great info on its website...here is the link

piduk.org

And here is a link to the great info a big USA Immunodeficiency support group gives about complement deficiency:

primaryimmune.org/about-pri...

Hope you have a very happy festive season & new year XOXO