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.
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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.
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?
Hallo Sam, from the NLs here.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
Hey it took about 6 months to see noticeable effects.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
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.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?
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 🤷🏼♂️
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
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?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.
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.