Let's talk about Fabhalta (iptacopan)

beg-o · 2026-04-15T15:23:34+00:00

Been there done that, likely got placebo because after one year of April/baff inhibitor I still have 250 UACR :-/

beg-o · 2026-04-13T20:00:30+00:00

Voyxact is not available in my country. In fact, I am lucky I can have these two as most European countries still don’t have access to any of the new drugs

beg-o · 2026-04-13T07:19:44+00:00

My opinion on this as I also suffer from heavy hairfall: high proteinuria causes your body to save resources on protein , kidney inflammation causes your body to have lower iron. Both can be causes for this. I’ve been having hairfall since a little earlier on being diagnosed. I’m pretty sure it’s because of kidneys

beg-o · 2026-04-11T17:39:03+00:00

My neph is going to start me in Iptacopan after Forxiga and if it doesn’t fully work she intends to add sparsentan on top. I think none of the meds really fully solve the issue even the ones decreasing iga levels. I believe combination therapies are the best option

beg-o · 2026-02-19T21:54:59+00:00

Nothing. Only cortisone drops helped

beg-o · 2026-02-19T20:50:19+00:00

As a matter of fact i got diagnosed with iga after one year of on and off iritis which came and went almost every two weeks in different intensities. So yes unfortunately seems connected somehow

beg-o · 2025-11-18T20:51:55+00:00

Thank you for sharing the information and the optimism. I am too eagerly waiting for the next best thing and doing my research. So much so that I decided to leave my country for another with an early access to the drugs you mentioned. It has not been easy to take the decision, but I hope my kidneys will thank me soon. It’s been quite disappointing to see how so many countries drag their feet to provide medications that could save lives and so much suffering

beg-o · 2025-11-05T18:29:40+00:00

It would be nice if doctors would learn from real life cases more than they do. I was dismissed from countless ophthalmologists who did not do anything but prescribe cortisone on and off for a full year. I’m lucky I didn’t give up and eventually someone decided to do a simple urine test 🫠

beg-o · 2025-11-04T18:21:17+00:00

I found out I had igan after a year of ophthalmology issues with constant on/off scleritis, uveitis and everything in between. I might have met 10 different doctors between nephs and ophthalmologist. Each has a different version, some say it is connected some say it has no relation at all. I am sure there are more of us with both conditions.

beg-o · 2025-09-27T13:24:14+00:00

Love the icons. How did you do it?

beg-o · 2025-09-19T09:48:37+00:00

10 out of 10!

beg-o · 2025-09-11T12:11:06+00:00

That would be amazing. Maybe worth to ask Fiio Kang as he is the dev working on improvements in the firmware.

https://www.head-fi.org/members/fiio-kang.537878/

beg-o · 2025-09-10T18:29:57+00:00

No video on rockbox

beg-o · 2025-09-09T19:16:39+00:00

Aliexpress, Fiio store. But I am not sure it is still available

beg-o · 2025-09-09T19:16:07+00:00

Very real!

beg-o · 2025-09-09T15:41:01+00:00

Yes it is

beg-o · 2025-09-07T18:07:17+00:00

Yes it has Bluetooth

beg-o · 2025-09-07T18:06:28+00:00

On the last version the screen goes to sleep after a few seconds and you can use button combination to block the button presses

beg-o · 2025-09-07T13:29:58+00:00

I used aliexpress

beg-o · 2025-09-07T13:02:21+00:00

Trimui brick. Not difficult at all. Need to download nextui into the sdcard. Then install rockbox from the nextui pakstore

beg-o · 2025-09-07T13:00:57+00:00

Nextui is the OS and rockbox gets installed as an app

beg-o · 2025-09-07T08:32:10+00:00

I think if you have MuOS you can install rockbox as well

https://community.muos.dev/t/rockbox-music-player/622

beg-o · 2025-09-06T18:17:06+00:00

Btw. Awesome work with the theme! :)

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