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?

 

[Slushiefan]

My dosage is 15mg daily of Rinvoq or upadacitinib.

After first few days dosing, I didn't notice much difference, except maybe a very slight reduction in fatigue.

At about 30 days, I experienced a overnight reduction in pain, fatiguability eg when walking, and the overall constant fatigue, which is still there at ~40 days. That said, I am also beginning very recently (last couple days) to again experience the waxing and waning of my symptoms, though overall the severity seems to be reduced.

I would say it seems like other things we have found, where a short time after improvement (improvement for me was at 30 days) symptoms gradually return . Hopefully now though the severity will be reduced - that would be enough to make me happy.

On the bright side - it's working great for my psoriasis.

PEM is different for me than others have mentioned. I definitely get very tired after a walk, but it doesn't seem to drop down all of my functionality for days - I just get sleepy, I take an hour long nap, and I'm back where I was pretty much after a day or so. And taking long rests don't improve my baseline either.

 

[hmnr asg]

My dosage is 15mg daily of Rinvoq or upadacitinib.

After first few days dosing, I didn't notice much difference, except maybe a very slight reduction in fatigue.

At about 30 days, I experienced a overnight reduction in pain, fatiguability eg when walking, and the overall constant fatigue, which is still there at ~40 days. That said, I am also beginning very recently (last couple days) to again experience the waxing and waning of my symptoms, though overall the severity seems to be reduced.

I would say it seems like other things we have found, where a short time after improvement (improvement for me was at 30 days) symptoms gradually return . Hopefully now though the severity will be reduced - that would be enough to make me happy.

On the bright side - it's working great for my psoriasis.

PEM is different for me than others have mentioned. I definitely get very tired after a walk, but it doesn't seem to drop down all of my functionality for days - I just get sleepy, I take an hour long nap, and I'm back where I was pretty much after a day or so. And taking long rests don't improve my baseline either.

May I ask how you were able to get rinvoq ? I tried convincing my doctor but had no luck

 

[Slushiefan]

May I ask how you were able to get rinvoq ? I tried convincing my doctor but had no luck

Sure. I happen to also have comorbid psoriatic arthritis, and anti-tnf therapy failed to help. I tried humira for a number of months several years ago.

I didn’t try enbrel - wondering if I should or not. I should try to look that up in the forums.

It seems the Rinvoq is helping, but it is very slow to work. Studies show it could take 14 weeks for full effect.

 

[Slushiefan]

I am at 8 weeks now of Rinvoq, and most of my symptoms seem to have returned. It doesn't look great for Rinvoq in my case.

Exceptions are a mild reduction in stamina (I work/walk/go longer before becoming fatigued) and in brain fog (I can keep enough focus now to read and light study once again). Also, some of my arthritis like symptoms have abated some - including a reduction in those pains, and a near resolution of the long standing psoriasis on my knees.

The fatigue and daytime sleepiness symptoms persist as they always have, as well as many of the aches/pains.

My summary is this is not at all the silver bullet for CFS I had hoped it might be.

After going through a few 'silver bullet hopefuls over the years, I was prepared for that outcome, and my expectations were low. So, for now, I will accept the gains presented and keep pressing on with Rinvoq. I will update here with anything meaningful.

As this was my 4th or 5th attempt at arthritic/immune system treatments (prednisone, methotrexate, sulphasalazine, anti-tnf's, and now Rinvoq), all of which helped a little but never a lot, I think I am becoming confident that the root of my issues is not due to an ongoing immunological issue.

Disappointingly, if this is not an immunological issue, I am left with very little that explains just what is driving all of this.

We persevere.

 

[jaybee00]

am at 8 weeks now of Rinvoq, and most of my symptoms seem to have returned. It doesn't look great for Rinvoq in my case.

Hi did you withdraw from Rinvoq or are you still taking it. If you are still taking it, is it still not working much?

 

[Woodyrob]

Janet Dafoe (Ron Davis’s wife) Tweeted in the last few days that Robert Phair report the “2 patients greatly improved on JAK STAT1 inhibitors”

When asked for which JAK STAT inhibitors and how soon was the recovery, the reply was

Janet Dafoe’s Answer:

1. Filgotinib. 3 days
2. Rinvoq. 2 months.

B Rob question: To clarify did the 2 patients completely stop the JAK inhibitors once they improved & still remain healthy? Or do they keep taking it?


Janet Dafoe’s Answer:

They stopped and they're still good

 

[DonPepe]

I can source Rinvoq at about 5 dollars a tablet so not expensive.

 

[Woodyrob]

I can source Rinvoq at about 5 dollars a tablet so not expensive.

That’s good to know. What country are you in?

I can get Baricitinib for NZD $2.10 a pill although it’s a much more broad JAK STAT inhibitor (think it’s classes as JAK 1 and 2.)
and from hearing ME/CFS patients say Baricitinib can take 6 months to work. I had intolerance issue on it. Which I found I can turn off with a glucocorticoid but I can’t do that for 6 months. as there’s faster acting ones I’m better to wait.

But Rinvoq (Upadacitinib) is a more targeted Jak 1 inhibitor as is Filgotinib.

 

[DonPepe]

I source my drugs from a broker in India.

 

[Inez]

That’s good to know. What country are you in?

I can get Baricitinib for NZD $2.10 a pill although it’s a much more broad JAK STAT inhibitor (think it’s classes as JAK 1 and 2.)
and from hearing ME/CFS patients say Baricitinib can take 6 months to work. I had intolerance issue on it. Which I found I can turn off with a glucocorticoid but I can’t do that for 6 months. as there’s faster acting ones I’m better to wait.

But Rinvoq (Upadacitinib) is a more targeted Jak 1 inhibitor as is Filgotinib.

Does baricitinib take 6 months+ to work at the dosage of 2 or 4mg as prescribed for autoimmune conditions or much faster if at the dosage needed to escape itaconate shunt? Do we know what that dosage is yet?

 

[Woodyrob]

Does baricitinib take 6 months+ to work at the dosage of 2 or 4mg as prescribed for autoimmune conditions or much faster if at the dosage needed to escape itaconate shunt? Do we know what that dosage is yet?

I read in a different platform someone say quote “KDM expect his patients take Bactrinib at least 6 months, that's when most of the effects are noticeable.”
(Apparently, KDM is a ME/CFS doctor or a clinic somewhere)

Which means I can’t do that because I have that awful drug hypersensitivity intolerance issue to Baricitinib (same issue with several but not all medications) . However I did find that if I combine a low dose of dexamethasone with Baricitinib then the awful drug intolerance sensations go away. I checked to see if humans had already tried that combination. And it is done for people in the anccute inflammatory Covid stage. So at least I know it’s not unheard of.. but there’s no way I could do that for six months. As too hard on the body. But I’d do it for a few weeks.

So, I’m liking what you are saying about Rob Phair’s escape velocity being needed with a higher dose. Maybe Baricitinib’s dose range is too low for ME/CFS. It’s broadness is why it’s lower perhaps.

Reading into what you say, we aren’t trying to turn down immunity to get rid of rheumatoid arthritis or other inflammatory issues which Baricitinib is designed for. We are trying to turn off the shunt long enough it clicks innate immunity back to natural homeostasis . Which if we boosted the dose, it may actually work.

I’m not sure I want to be the first to try that though lol

Do you have Baricitinib?

 

[DonPepe]

I read in a different platform someone say quote “KDM expect his patients take Bactrinib at least 6 months, that's when most of the effects are noticeable.”
(Apparently, KDM is a ME/CFS doctor or a clinic somewhere)

Which means I can’t do that because I have that awful drug hypersensitivity intolerance issue to Baricitinib (same issue with several but not all medications) . However I did find that if I combine a low dose of dexamethasone with Baricitinib then the awful drug intolerance sensations go away. I checked to see if humans had already tried that combination. And it is done for people in the anccute inflammatory Covid stage. So at least I know it’s not unheard of.. but there’s no way I could do that for six months. As too hard on the body. But I’d do it for a few weeks.

So, I’m liking what you are saying about Rob Phair’s escape velocity being needed with a higher dose. Maybe Baricitinib’s dose range is too low for ME/CFS. It’s broadness is why it’s lower perhaps.

Reading into what you say, we aren’t trying to turn down immunity to get rid of rheumatoid arthritis or other inflammatory issues which Baricitinib is designed for. We are trying to turn off the shunt long enough it clicks innate immunity back to natural homeostasis . Which if we boosted the dose, it may actually work.

I’m not sure I want to be the first to try that though lol

Do you have Baricitinib?

Hi

Does baricitinib take 6 months+ to work at the dosage of 2 or 4mg as prescribed for autoimmune conditions or much faster if at the dosage needed to escape itaconate shunt? Do we know what that dosage is yet?

Hi

I’m in the uk.