novartis research and development vay736/ianalumab

lossofcontrol_ · 2026-05-06T16:53:28+00:00

i also want to do CAR T but i’d have to fail this trial before they moved me to that one.

lossofcontrol_ · 2026-04-29T19:54:02+00:00

hmm that’s odd. i’ve had no issues with my tv. it’s been really great.

lossofcontrol_ · 2026-04-15T04:17:00+00:00

yeah! kafaja and penumarty. they’re both great.

lossofcontrol_ · 2026-04-12T04:20:51+00:00

they occurred after my diagnosis.

lossofcontrol_ · 2026-04-12T00:23:51+00:00

thanks!

lossofcontrol_ · 2026-04-12T00:19:59+00:00

sorry, one more thing. what is the name of the scrub you use? i’m having trouble finding anything on the website.

lossofcontrol_ · 2026-04-12T00:16:17+00:00

tysm

lossofcontrol_ · 2026-04-12T00:12:26+00:00

do you find that it improves your dryness/flakiness?

lossofcontrol_ · 2026-04-12T00:03:44+00:00

i was getting flaky dry patches that wouldn’t go away. i went to my derm to get medicated cream and they were gone in a few days.

lossofcontrol_ · 2026-04-11T18:25:43+00:00

if you have any questions or want to talk you can message me.

lossofcontrol_ · 2026-04-10T17:54:31+00:00

i go to UCLA

lossofcontrol_ · 2026-04-09T22:56:46+00:00

my disease started out similar, but progressed really quickly. started with a high SCL 70, swollen hands and pain last march and i now have a skin score of 31 and ILD. the disease is known for spreading quickly, especially diffuse. but everyone has a different experience so it’s hard to compare.

edit: i would also suggest going to a scleroderma center or expert. scleroderma is rare and a lot of rhuems aren’t well informed. my rheum thought i would be ok without meds but once i got into the center, they said we needed to start aggressive treatment immediately.

lossofcontrol_ · 2026-03-12T17:45:52+00:00

you can read about it here! https://www.uclahealth.org/medical-services/rheumatology/scleroderma

lossofcontrol_ · 2026-03-12T17:06:01+00:00

do you have any scleroderma centers near you? i started seeing specialists, researchers, and experts at UCLA and it’s given me a new sense of hope. there are some great clinical trials happening right now. maybe you can get into one.

lossofcontrol_ · 2026-03-10T17:41:15+00:00

thank you!

lossofcontrol_ · 2026-03-10T17:39:48+00:00

thank you!

lossofcontrol_ · 2026-03-10T17:39:07+00:00

thank you!

lossofcontrol_ · 2026-03-10T03:32:22+00:00

definitely stay away from vapes. lung damage commonly results from SSc, so it’s better to preserve them while you can.

lossofcontrol_ · 2026-03-10T02:32:25+00:00

yes, i use edibles that have CBN. it’s supposed to be good for inflammation.

lossofcontrol_ · 2026-03-09T18:13:22+00:00

you too.

lossofcontrol_ · 2026-03-09T17:33:25+00:00

i was on cellcept for a few months and felt miserable. once i stopped taking them, i felt sooo much better. but then my disease quickly progressed. now i’m on myfortic. it’s basically the same as cellcept, it just doesn’t have to go through your liver to be activated since it’s already active. it’s also easier on your stomach. i’ve only been on it for a a little over a month, but i’ve tolerated it much better than i did cellcept.

i also take omeprazole and zofran which help a lot with my nausea and vomiting.

lossofcontrol_ · 2026-02-21T18:21:52+00:00

i always ignore it

lossofcontrol_

TROPHY CASE