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

[Aubry]

Prof. Meirleir said most JAK inhibitors that are available today for other diseases are bad for ME/CFS cause of highly increased risk in developing cancer.

 

[knackers323]

Most is alright. Did he mention the ones that are ok?

@justy have you tried anything to counter the inflammation and cytokines?
Apologies if youve already mentioned it

 

[Aubry]

I heard a patient who will try filgotinib soon.

 

[Sushi]

I heard a patient who will try filgotinib soon.

It is approved in the EU but not yet in the US.

 

[Aubry]

I know. FDA didnt want to loose whole humira market. It is rather hypocrite they did approve another JAK inhibitor that is more dangerous lol

 

[sam.d]

I heard a patient who will try filgotinib soon.

Hey Aubry, has this patient tried filgo yet?

 

[bread.]

Did anyone try a JAK inhibitor yet?

 

[sam.d]

Did anyone try a JAK inhibitor yet?

I have been on filgo since February 1st, 2022

12+ months and running

AMA

 

[Vlad83]

I have been on filgo since February 1st, 2022

12+ months and running

AMA

Are you taking it for ME/CFS or do you have one of the conditions it's officially approved for?

Is it helping?

 

[sam.d]

Are you taking it for ME/CFS or do you have one of the conditions it's officially approved for?

Is it helping?

Taking it for ME/CFS (see my historical posts).

It's definitely helping, albeit super slowly. My rate of progress is about the same as the rate of my decline as far as I can tell. And I've been on a slow decline since 1987.

Biggest improvement so far are:
- my inflammatory episodes are getting milder by the month
- used to not be able to get out of bed before 9AM (with extreme effort), now I have been up and about before 7AM, since about 3 months now.
- Slowly my sleep is restoring. The past 7 years I used to wake up every 1,5 hour at least to go to the bathroom. In the past weeks I have had 3 nights already with blocks of 5 hours of uninterrupted sleep. I got very emotional about that because it feels so different. The following days were some of my first days in over a decade without heavy brain fog and sleepy drunken daze the whole day.

There's a lot more tiny improvement but those are the main ones so far.

 

[Vlad83]

Taking it for ME/CFS (see my historical posts).

It's definitely helping, albeit super slowly. My rate of progress is about the same as the rate of my decline as far as I can tell. And I've been on a slow decline since 1987.

Biggest improvement so far are:
- my inflammatory episodes are getting milder by the month
- used to not be able to get out of bed before 9AM (with extreme effort), now I have been up and about before 7AM, since about 3 months now.
- Slowly my sleep is restoring. The past 7 years I used to wake up every 1,5 hour at least to go to the bathroom. In the past weeks I have had 3 nights already with blocks of 5 hours of uninterrupted sleep. I got very emotional about that because it feels so different. The following days were some of my first days in over a decade without heavy brain fog and sleepy drunken daze the whole day.

There's a lot more tiny improvement but those are the main ones so far.

This is awesome, I hope these improvements stay. Interesting that it's taking time--this doesn't jive with Davis/Phair's idea (itaconate shunt) that it would just be a 2-3 day course. But hey, if it works at all, that's huge!

I've read your history now. Did KDM prescribe it? I believe filgo is not approved in the USA. Are you in Europe? How much does it run per month?

 

[sam.d]

This is awesome, I hope these improvements stay. Interesting that it's taking time--this doesn't jive with Davis/Phair's idea (itaconate shunt) that it would just be a 2-3 day course. But hey, if it works at all, that's huge!

I've read your history now. Did KDM prescribe it? I believe filgo is not approved in the USA. Are you in Europe? How much does it run per month?

It's been lifechanging for me to be on an upward trajectory after 35+ years on a downward spiral.
Huge emotional lift.

- Yes KDM prescribed it
- He said it would take a long time, years to heal, not days
- I'm in Europe yes
- It costs me net about $950 USD per month for 30 tablets

 

[dr. Arf]

It's been lifechanging for me to be on an upward trajectory after 35+ years on a downward spiral.
Huge emotional lift.

- Yes KDM prescribed it
- He said it would take a long time, years to heal, not days
- I'm in Europe yes
- It costs me net about $950 USD per month for 30 tablets

Hallo Sam, from the NLs here.

Do you still take fitoglinib ?
How long does it take before you notice it working?

I got a prescription from DML.
Still not sure if I’m going to order and try.

I need to get it from a Belgium pharmacy because in the Netherlands is impossible if you don’t have a prescription from hospital specialist.
I hope they can send it over because I’m pretty much bed/housebound

 

[datadragon]

Happy for your progress! First thought, Jak1 was required for both signaling and biologic response induction by IFNα and IFNγ, however it is also needed for induction of anti inflammatory IL-10–dependent responses as well as quite a number of others that you are also blocking now ongoing. It seems you are not blocking the IFNa (if stuck on) leading to IFNy and turning it off, instead blocking the response effect of that signaling, but in doing so also blocking the effects of other important cytokine responses below. IFN-a, IFN-,y, and EGF all lead to the phosphorylation of Jakl and Statl, which might suggest a linear pathway with Jakl as the final active kinase after IFN-a activation of Tyk2 and IFN-y activation of Jak2. Not a great place to target it seems but at minimum maybe some day on/day off experimenting rather than every day. https://www.nature.com/articles/s41392-021-00791-1 https://www.cell.com/cell/fulltext/S0092-8674(00)81166-6 https://www.science.org/doi/10.1126/science.8197455 https://pubmed.ncbi.nlm.nih.gov/12686512/

JAK1 is widely expressed in tissues and can phosphorylate all STATs. JAK1 is phosphorylated by four cytokine-receptor families: (1) Cytokine receptors with the γc receptor subunit, IL-2 receptor, IL-4 receptor, IL-7 receptor, IL-9 receptor, and IL-15 receptor; (2) class II cytokine receptors include the IFNα/β receptor, IFN-γ receptor, and IL-10 family cytokine receptors; and (3) receptors with a gp130 subunit, including the IL-6 receptor, IL-11 receptor, ciliary neurotrophic factor (CNTF) receptor, oncostatin M (OSM) receptor, leukemia inhibitory factor (LIF) receptor, and cardiotrophin-1 (CT-1) receptor.34 JAK1 can promote body haematopoietic function after being activated by IL-3, IL-5, IL-7, granulocyte–macrophage colony-stimulating factor (GM-CSF), or granulocyte colony-stimulating factor (G-CSF).35 JAK1−/− mice are perinatal dead and exhibit neurological disease and severe lymphocyte damage caused by deficient of LIF and IL-7 signal, JAK2-knockout mice exhibit specific defects in IFN-γ-related biological responses, but they do not respond to IFN-α or IFN-β. It also has numerous other effects mentiioned and appears not good to constantly inhibit without breaks.

 

[sam.d]

Hallo Sam, from the NLs here.

Do you still take fitoglinib ?
How long does it take before you notice it working?

I got a prescription from DML.
Still not sure if I’m going to order and try.

I need to get it from a Belgium pharmacy because in the Netherlands is impossible if you don’t have a prescription from hospital specialist.
I hope they can send it over because I’m pretty much bed/housebound

Hey it took about 6 months to see noticeable effects.
Then after one year I reached my peak and now I feel better when weaning off.

I was on 1 tablet per day for a year, now I'm already down to 1 tablet per 72 hours and planning on going to 1 per 4 days soon and hopefully I can completely stop this year.

It's incredibly powerful and has changed my life!

Filgo made it possible for me to stop taking both Gammanorm and Normix which previously I could not live without for even 1 day.

 

[dr. Arf]

Good 👍🏼. That sounds pretty amazing for you.
Where do you estimate you are at, functioning level? 90%?

So 6 months before you see it working..
Do you know the biological / medical reasons behind it?
Side effects?

And now you notice no more benefit?
– it’s maybe because you reversed the immune / metabolism mechanisms in your body
- do you feel that your immune system is working again?

Lots of questions but very few tried and it’s a big investment 🤷🏼‍♂️

 

[sam.d]

Good 👍🏼. That sounds pretty amazing for you.
Where do you estimate you are at, functioning level? 90%?

So 6 months before you see it working..
Do you know the biological / medical reasons behind it?
Side effects?

And now you notice no more benefit?
– it’s maybe because you reversed the immune / metabolism mechanisms in your body
- do you feel that your immune system is working again?

Lots of questions but very few tried and it’s a big investment 🤷🏼‍♂️

For the science it's better to ask KDM for the full picture. I haven't done scientific research on it. I just know that it's an extremely powerful anti-inflammatory that targets JAK receptors.

The side effects were mostly confined to sometimes a burning feeling in the lower belly and urine tract. This is also the most common side-effect.

After about 6 months I started getting more energy, was able to wake up earlier, brain fog went down, all psychological symptoms like mood swings, anxiety and depression started melting away, motivation and concentration hugely improved, improved peristalsis, fatigue during the day went away, appetite improved, and more. My sleep has also improved tremendously. I'm routinely sleeping for 5 hours now without waking up. That's like more than 20 years ago since I last experienced that. It was very emotional for me when I started feeling this again, being well rested and able to think clearly for the first time in decades...

One of the most significant boosts that I am most happy about is getting my old confidence back that yes, you can beat this disease.

Before Jyseleca I couldn't live for a day without Gammanorm, Normix and Mutaflor. Now, I have stopped taking all three of those and cut my oxygen time in half and I'm planning on phasing it out completely by September. By then I want to have stopped taking Jyseleca as well. Then I'll start working on weaning off Telfast, Choline, and Macrogol. And my plan is to start broadening my diet again too this year, which I've already started now slowly. But all in all I've taken a huge leap already. All thanks to Jyseleca which started everything.

I also still take B12 injections twice a week. KDM said I can wean off of all my medication (slowly) but I have to keep B12 to the last moment and should only stop once I do blood tests and my inflammation markers are proven to be ok.

In terms of percentage I'd say I went from 1% functioning to 10% of my old self. May not sound much but for me the 10X improvement is mind-blowing and life-changing. Now it's on me to climb the whole way back to 100% which of course is going to take exercise etc to build back muscle and get my nervous system condition back to full health. But I feel in a tremendous position to build now which I didn't have a year ago.

Hope this helps a bit.

ps re "now you notice no more improvement". Yes after a year it came to a point where I started feeling better when cutting my dose in half. That's the point when you know you can start weaning off I think. I feel that the medicine had taken me as far as it can and now it's up to my own body and mind to take charge from this point. This is common with anti-inflammatory medicines once the inflammation lowers beyond a certain treshold. Your body will start to feel better if you stop the medicine or take less.

 

[Vlad83]

Thank you for the update, @sam.d. Hope you continue to improve!

I am curious if KDM screened you for chronic infections (such as yersinosis) before starting you on filgo. My biggest concern with this drug would be reactivating infections.

 

[sam.d]

Thank you for the update, @sam.d. Hope you continue to improve!

I am curious if KDM screened you for chronic infections (such as yersinosis) before starting you on filgo. My biggest concern with this drug would be reactivating infections.

yes he did order a bunch of test as he does during every consult but I almost never take them to save costs. I wanted to save as much money as possible for the treatment itself. Plus you very quickly get a feel for how good or bad you are doing. If you would really feel a lot worse then just stop taking it. Otherwise, be prepared to sit through some discomfort. It's worth it in the end

 

[junkcrap50]

For the science it's better to ask KDM for the full picture. I haven't done scientific research on it. I just know that it's an extremely powerful anti-inflammatory that targets JAK receptors.

The side effects were mostly confined to sometimes a burning feeling in the lower belly and urine tract. This is also the most common side-effect.

After about 6 months I started getting more energy, was able to wake up earlier, brain fog went down, all psychological symptoms like mood swings, anxiety and depression started melting away, motivation and concentration hugely improved, improved peristalsis, fatigue during the day went away, appetite improved, and more. My sleep has also improved tremendously. I'm routinely sleeping for 5 hours now without waking up. That's like more than 20 years ago since I last experienced that. It was very emotional for me when I started feeling this again, being well rested and able to think clearly for the first time in decades...

One of the most significant boosts that I am most happy about is getting my old confidence back that yes, you can beat this disease.

Before Jyseleca I couldn't live for a day without Gammanorm, Normix and Mutaflor. Now, I have stopped taking all three of those and cut my oxygen time in half and I'm planning on phasing it out completely by September. By then I want to have stopped taking Jyseleca as well. Then I'll start working on weaning off Telfast, Choline, and Macrogol. And my plan is to start broadening my diet again too this year, which I've already started now slowly. But all in all I've taken a huge leap already. All thanks to Jyseleca which started everything.

I also still take B12 injections twice a week. KDM said I can wean off of all my medication (slowly) but I have to keep B12 to the last moment and should only stop once I do blood tests and my inflammation markers are proven to be ok.

In terms of percentage I'd say I went from 1% functioning to 10% of my old self. May not sound much but for me the 10X improvement is mind-blowing and life-changing. Now it's on me to climb the whole way back to 100% which of course is going to take exercise etc to build back muscle and get my nervous system condition back to full health. But I feel in a tremendous position to build now which I didn't have a year ago.

Hope this helps a bit.

ps re "now you notice no more improvement". Yes after a year it came to a point where I started feeling better when cutting my dose in half. That's the point when you know you can start weaning off I think. I feel that the medicine had taken me as far as it can and now it's up to my own body and mind to take charge from this point. This is common with anti-inflammatory medicines once the inflammation lowers beyond a certain treshold. Your body will start to feel better if you stop the medicine or take less.

What happened between the Filgotinib (started Feb 2022) and the comment below you made in Jan. 2019? Did you get worse? Do you think the Filgotinib helped more? Do you think it is going to be more permenant?

Last year I started treatment with KDM, as recommended by people on here.
So far it has been nothing short of miraculous. I went from near totally bed-ridden and almost not being able to speak anymore, to practically being my normal self again (mentally), being up and about in the house all day (not a minute in bed during the day), and being able to do volunteer work 7 days a week (from home) with virtually full mental capacity and zero brain-fog. Truly, a night and day difference. Friends and family say they almost couldn't recognize me anymore at my deepest point a year ago, and that now they almost can't tell the difference from when I was in full health.