Filgotinib case studies

[Thinktank]

Filgotinib has been on the market for over a year now. Thus far i have not found any case studies. Is anyone on the forum using filgotinib? Or perhaps know of any case studies, or experiences posted online by patients? Not just in relation to ME/CFS, but any other disease like rheuma, crohn's etc.

 

[dr. Arf]

I know of one patient of KDM / DML that claims 25% improvement.
He is moderate/mild, in which improvement comes easier

 

[hmnr asg]

any updates on this? has anyone been able to try it?
Filgotinib (Jyseleca) is now widely available in Europe and Japan, and another Jak1 inhibitor, Rinvoq (Upadacitinib) is available in the US. Given the implications in the Itaconate Shunt theory, I think someone must have tried one of these who could share their experience?
It has been two years since this post was created

 

[Slushiefan]

Well, I was just prescribed Rinvoq by my doctors at the VA, and was searching to see how others had fared with JAK inhibitors.

I will update here again when I actually have something to share, hopefully I’m a few weeks/months.

-Ken

 

[hmnr asg]

Well, I was just prescribed Rinvoq by my doctors at the VA, and was searching to see how others had fared with JAK inhibitors.

I will update here again when I actually have something to share, hopefully I’m a few weeks/months.

-Ken

Wow how did you manage to convince your doctor to give you rinvoq ? I am trying to find a doctor who is willing to give it to me, but so far unsuccessfully.

Thank you for sharing and thanks for keeping us updated on the results.

 

[dr. Arf]

Well, I was just prescribed Rinvoq by my doctors at the VA, and was searching to see how others had fared with JAK inhibitors.

I will update here again when I actually have something to share, hopefully I’m a few weeks/months.

Better move your updates here:
- it s more complete

https://forums.phoenixrising.me/thr...of-cfs-me-treatment.54175/page-3#post-2438511

 

[Slushiefan]

Better move your updates here:
- it s more complete

https://forums.phoenixrising.me/thr...of-cfs-me-treatment.54175/page-3#post-2438511

I can’t thank you enough for pointing me back to this. It looks like I may have more reading to do before I begin reporting on any progress.

The VA finally moved this forward this week. I got approval for treatment with Rinvoq not for cfs, but for the more non-specific aches and joint pains I have, which are currently in mostly my tendons.

My tendons were already aching when my rheumatologist tapped them during a visit. The tap set off a pain response like I had been punched in my forearm, (which surprised both him and me). That led to a brief symptom history, then a decision to move forward with a trial.

I’ll try to update here as well as there as things progress.

 

[dr. Arf]

what is your dosage?

you also have typical ME CFS symptoms?
PEM?