interested if anyone with C3g also have APL and or drusen?

[Snut]

I have got APL and due to have a biopsy to confirm C3g . I also have drusen and wondered if anyone else had the same

[linfuller Ambassador]

I have drusen. Is there something you are wanting to know?

[Snut in reply to linfuller]

thanks, I guess I was interested to know if anyone had acquired partial lypodystrophy more as it's an immune system disorder and so im worried about being put on immuno suppressants. But also with the drusen if it is affecting your eyesight yet?

[linfuller Ambassador in reply to Snut]

C3G is caused by an immune system disorder, as are all these things you have mentioned that C3G patients may experience. But it is an over activation of immune response that causes these conditions, which is why immune suppressants are necessary. Immune suppressants do increase your infection risks, but those risks are usually less than the risks of not treating your disease.

Yes, the drusen affects my eyesight, although that’s not true for everyone. In my case, the drusen cause the edge of my retina to not be able to lay flat, so my peripheral vision is distorted. Some people experience macular degeneration, but others never do. It’s important to see an eye specialist regularly to monitor, and to be seen right away if you notice changes in your vision.

[Snut in reply to linfuller]

thx, that's helpful. Having had streptococcal sepsis in my 20's which nearly took my life I'm really nervous of those kind of drugs.

[linfuller Ambassador in reply to Snut]

Patients with complement dysregulation can be susceptible to bacterial infections, so it’s important for us to be vaccinated and to seek care early when we suspect infection. I have also has some scary infections, we just have to be vigilant.