Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

[Aubry]

I tried filgotinib 3 years ago for 3 months.
Zero effect.

 

[hmnr asg]

I tried filgotinib 3 years ago for 3 months.
Zero effect.

how long were you on it? did KDM prescribe it?

 

[Aubry]

how long were you on it? did KDM prescribe it?

Yes. KDM when I still was going to him. Im from Europe, filgotinib is easy to get.

 

[MartinK]

Guys, can we determine for which subset of patients Filgotinib (or Baricitinib) may be useful?

It's a big commitment because apparently it can take a long time to see results, so it's key to guess who can benefit from it…

 

[DonPepe]

Guys, can we determine for which subset of patients Filgotinib (or Baricitinib) may be useful?

It's a big commitment because apparently it can take a long time to see results, so it's key to guess who can benefit from it…

It may take a great deal of time to yield any positive results but let’s not forget reports of an individual in Australia being “cured” within 3 days. Ron Davis’s words not mine.

 

[Inez]

Guys, can we determine for which subset of patients Filgotinib (or Baricitinib) may be useful?

It's a big commitment because apparently it can take a long time to see results, so it's key to guess who can benefit from it…

Maybe those who have found that 'immune boosters' make them feel worse might turn out to be the better candidates for Jak-Stat inhibitors?

 

[MartinK]

This is info from Chat GPT about patient subset:

JAK1 inhibitors such as Filgotinib may theoretically be effective especially in a subset of patients in whom the dominant disease mechanism is chronic inflammation mediated by pro-inflammatory cytokines such as interferons and interleukins that utilize the JAK1 pathway. These patients may show elevated serum levels of inflammatory markers and have symptoms that are closely related to chronic activation of the immune system, including intense fatigue, muscle pain, and neurocognitive difficulties.

Filgotinib, as a selective JAK1 inhibitor, could reduce the production of these pro-inflammatory cytokines and thus reduce immune activation, potentially leading to remission or significant improvement of clinical symptoms in this specific subset of patients.

However, it is possible that your symptoms are caused by other mechanisms associated with JAK-STAT pathway dysregulation that are not directly apparent from standard cytokine measurements. For example, some forms of dysautonomia or neuroendocrine dysregulation may affect this pathway, which could theoretically lead to some improvement with JAK1 inhibition. There are also other mechanisms of action of JAK1 inhibitors that could influence symptoms that are not purely immunological in origin.

 

[Woodyrob]

Here’s some interesting information. I wonder if it’s you guys or other people?

Janet Dafoe (Ron Davis’s wife) Tweeted over 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, her reply was…


Janet Dafoe answered:

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

B Rob asked this 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 answered:

They stopped and they're still good

 

[Finnishgunner4]

I wonder if this would work in patients who were responders to Rituximab. What I’ve understood is Filgotinib is used for autoantibody associated illnesses like rheumatoid arthritis. Any thoughts on this?

 

[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

 

[Woodyrob]

UPDATE

I’ve been on Baricitinib for 16 days. Was on a double dose (at 8mg) for 10 days so far.

No improvement yet.

So today I increased to 10mg

I’m on prednisone at the same time as Baricitinib (reason mentioned before) , prednisone knocks me around a little but it’s not something I can’t handle at the moment.
I think maybe the Baricitinib dose is still too low.

I see the main side effects of higher dosing is more likely to risk an infection, which i haven’t had. I am isolating with two dogs (which aren’t overly clean so I must still have immunity)

The other side effect to worry about is anemia, But that more long term use.

I might go to 12mg for a week. if an infection comes I’ll stop.

I have to be off these meds anyway by 8th of November as have to stop isolation as will be around people.

Which will be 5 weeks. So probably best to crank it up in this last stretch.

I don’t hold much hope for Baricitinib though as I think it’s too broad JAK 1 & 2 as inhibits a wide spectrum of cytokine communication. Which could be mean the dose is less potent that the Filgotinib or RINVOQ because a higher dose on them wouldn’t blindly affect as many types of cytokines, so you could potentially really push up the dose targeting less and shut off a narrower part of innate immunity. We kind of know by that chart (attached ) what part that is because as we also know the two or three people who were cured used those specific JAK STAT 1 inhibitors

I want to see others dosing high like me. To create escape velocity. A good hard aggressively dosing to fully block that same signalling pathway.!

Has anyone else tried boosting and cranking the dose of any JAK high enough for ME/CFS? Or am I a lone wolf

 

[DonPepe]

UPDATE

I’ve been on Baricitinib for 16 days. Was on a double dose (at 8mg) for 10 days so far.

No improvement yet.

So today I increased to 10mg

I’m on prednisone at the same time as Baricitinib (reason mentioned before) , prednisone knocks me around a little but it’s not something I can’t handle at the moment.
I think maybe the Baricitinib dose is still too low.

I see the main side effects of higher dosing is more likely to risk an infection, which i haven’t had. I am isolating with two dogs (which aren’t overly clean so I must still have immunity)

The other side effect to worry about is anemia, But that more long term use.

I might go to 12mg for a week. if an infection comes I’ll stop.

I have to be off these meds anyway by 8th of November as have to stop isolation as will be around people.

Which will be 5 weeks. So probably best to crank it up in this last stretch.

I don’t hold much hope for Baricitinib though as I think it’s too broad JAK 1 & 2 as inhibits a wide spectrum of cytokine communication. Which could be mean the dose is less potent that the Filgotinib or RINVOQ because a higher dose on them wouldn’t blindly affect as many types of cytokines, so you could potentially really push up the dose targeting less and shut off a narrower part of innate immunity. We kind of know by that chart (attached ) what part that is because as we also know the two or three people who were cured used those specific JAK STAT 1 inhibitors

I want to see others dosing high like me. To create escape velocity. A good hard aggressively dosing to fully block that same signalling pathway.!

Has anyone else tried boosting and cranking the dose of any JAK high enough for ME/CFS? Or am I a lone wolf

Thanks for the update. Much appreciated.

 

[Woodyrob]

i’m wondering if phair is right and it‘s all about a high enough dose but then it only takes 3 days to flip the switch. would taking a high dose filgotinib (e.g. 500 mg/day) for 3 days only maybe have the same effect as long term standard dosing? pls contact me if anyone has tried or will try this.

I’m on a short course but high dose of Baricitinib. You can read my update in this thread. I’ll probably need to bloods checked for anaemia soon as am pushing the boundaries of its intended use

 

[Sushi]

i’m wondering if phair is right and it‘s all about a high enough dose but then it only takes 3 days to flip the switch. would taking a high dose filgotinib (e.g. 500 mg/day) for 3 days only maybe have the same effect as long term standard dosing? pls contact me if anyone has tried or will try this.

According to the calculations of a researcher, 500 mg of Filgotinib would equal 37.5 mg of Rinvoq. Rinvoq is dosed at 15 mg, 30 mg or 45 mg per day, so 30.7 is not even the highest dose available.

 

[dr. Arf]

I’m going to copy paste text I’ve written somewhere else, as I trialed it for 4 months (and might do it again)

My experience / experiment Filgotinib:

- Aug 2023: 6 weeks 200 mg/day
No noticeable effect (very minor side effects)

Followed by a pulse protocol:
- 3 consecutive days higher dosage
- 1 week stop
- 3 consecutive days higher dosage
- 1 week stop

Repeated 5 times.
- note : research yourself because might be a risky treatment

might repeat

I did have a bit improvement but I do not know if I can subscribe this to Filgo or another

It’s all about pharmacokinetics: what is the dosage that Pieke concentrations of drugs/medicine can reach every tissue, including bossing the blood brain barrier?
- based on the theory that there are cells all over the body that have dysfunctional mitochondria
- cell danger, response theory from Naviaux - or Itaconate Shunt Theory Phair

So no clue if this is correct, but I took the risk to give it a try, altho A high-dose strongly suppresses your immune system.

basically, with normal doses of 200 mg Filgotinib
- I did 3 days 600 mg
- and ever one 3-day course I had one day with 800 mg

But pharmacokinetics of Filgotinib there is little information, so I was guesstimating.

anyway, for me: (very) severe - no noticeable effect

 

[dr. Arf]

According to the calculations of a researcher, 500 mg of Filgotinib would equal 37.5 mg of Rinvoq. Rinvoq is dosed at 15 mg, 30 mg or 45 mg per day, so 30.7 is not even the highest dose available.

would be interesting to know which researcher you’re talking about?
– And why he brought this forward

As maximum (recommended) existing dosage of Filgo is 200mg

 

[Woodyrob]

According to the calculations of a researcher, 500 mg of Filgotinib would equal 37.5 mg of Rinvoq. Rinvoq is dosed at 15 mg, 30 mg or 45 mg per day, so 30.7 is not even the highest dose available.

I wonder what 12mg of Baricitinib is compared Rinvoq and Filgotinib? I took that dose today. Prior been on 8mg for 10 days, and 4 mg about 5 or 6 days so far,. The upper dose of Baricitinib is 8mg so I’m probably in uncharted territory unless anyone has seen anything written on a 12mg dose?

I’ll do this for a week more, and maybe if I feel ok will try do to weeks. But probably too risky to continue after that.

 

[Sushi]

would be interesting to know which researcher you’re talking about?
– And why he brought this forward

As maximum (recommended) existing dosage of Filgo is 200mg

I don’t have permission to name the researcher, I can only share that they are at a major US university. I asked for the equivalency between Rinvoq and Filgotinib but they didn’t comment on taking doses of Filgotinib higher than 200 mg, just that 200 mg of Filgotinib would be equivalent to 15 mg of Rinvoq.

I wonder what 12mg of Baricitinib is compared Rinvoq and Filgotinib? I took that dose today. Prior been on 8mg for 10 days, and 4 mg about 5 or 6 days so far,. The upper dose of Baricitinib is 8mg so I’m probably in uncharted territory unless anyone has seen anything written on a 12mg dose?

I hope to have the opportunity to ask about equivalencies with Baricitinib sometime soon.