JAK1 Inhibitor Rinvoq Quickly Returns Severely Ill ME/CFS Patient to Health - Parts I and II

[Sushi]

Wow! Great news. That's fantastic!

Yes, it is! I've been holding off posting about it to see whether it holds and to become aware of how these changes are manifesting. For instance, with the weather becoming warmer I've discovered that I am more tolerant of heat. I feel OK at about 3 degrees higher temperature than in the past. I've also discovered that while in the past I could barely croak out a note or two when trying to sing, now my voice seems to have returned to normal function. Another strange one (which other ME/CFS-Rinvoq patients have noticed) is a reset in normal weight. I had been at the same weight for years and now my steady weight it 5 pounds less.

I really don't understand the mechanism for these changes but am awaiting the results of immune testing to see if that sheds any light.

 

[Inez]

I took Rinvoq for 2 months and had very significant benefits...after stopping it, as was the case with Jen. My improvements were in the arena of the autonomic nervous system: orthostatic intolerance normalized (no more BP drop and pre-syncope while standing), temperature regulation normalized as did appetite. Before Rinvoq I felt famished most of the time, even after eating, though I did not gain weight. I went from severe insomnia to a "normal" sleep pattern and have a bit more stamina though I still will get 1 day of PEM if I overdue and do still have exertion intolerance. It was not an easy drug to take, but these improvements have now held for 5 months and I'll take that!

Wow!

 

[ryanc97]

Well, I believe there must be different subsets.

I am day 10 on Rinvoq/Filgonitib and have noticed no differences except my Seb Derm has gone. Fatigue is still there and has arguably gotten worse.

For myself - it was mycoplasma onset from exercising after recovering. Since Jan. Mild - can work with great difficulty.

I am suspecting Herpes virus reactivation. Next step is Valtrex and Valcyte.

I will add my symptoms, since doing carnivore, are only brainfog, fatigue, unrefreshing sleep and muscle weakness. No pain, no aches, no muscle twitching, no noise/sound problems, no heart rate spikes. So it is mostly brain related.

Also add zero side effects at all except for feeling more tired in the day. Having said that people say benefits come after stopping so .... let's see.

My main problem is deciding how long I should stay on this treatment.

 

[kushami]

I took Rinvoq for 2 months and had very significant benefits...after stopping it, as was the case with Jen. My improvements were in the arena of the autonomic nervous system: orthostatic intolerance normalized (no more BP drop and pre-syncope while standing), temperature regulation normalized as did appetite. Before Rinvoq I felt famished most of the time, even after eating, though I did not gain weight. I went from severe insomnia to a "normal" sleep pattern and have a bit more stamina though I still will get 1 day of PEM if I overdue and do still have exertion intolerance. It was not an easy drug to take, but these improvements have now held for 5 months and I'll take that!

I'm so happy to hear this!

 

[Sushi]

My main problem is deciding how long I should stay on this treatment.

Yes, that is the unknown! At this point we are just guessing. Hopefully the 2 large trials on JAK 1 inhibitors and long Covid will answer some questions—the results won’t be out for some time though. No doubt there are subsets—as yet undefined. Are you doing lab tests, before during and after? I did quite a lot of testing and am hoping that once I have all the results, they will be helpful.

 

[andyguitar]

I really don't understand the mechanism for these changes but am awaiting the results of immune testing to see if that sheds any light.

Fairly hard to work out the what and why of it all @Sushi as the effects on the immune system could be many.

no differences except my Seb Derm has gone.

Thats a positive.

Fatigue is still there and has arguably gotten worse.

Could be a side effect of the drug.

 

[Sushi]

. Fatigue is still there and has arguably gotten worse.

I felt much worse while actually taking Rinvoq and for a few weeks after stopping.

 

[dr. Arf]

except my Seb Derm has gone.

That’s interesting. I took 3,5 months Filgonitib and my greasy skin / scalp improved.
next to that I had temporary small improvement symptoms for 2,5 month
- after that, I lost effects

(I am very severe)

 

[ryanc97]

Yeah. I am not fussed about it. i think it's interesting as another thread was commented that you can even try both a JKI and an antiviral at the same time.

 

[Sushi]

Yeah. I am not fussed about it. i think it's interesting as another thread was commented that you can even try both a JKI and an antiviral at the same time.

Actually, my immunologist warned me that there was a risk of reactivating viruses while taking Rinvoq – and I would guess that applies to all JAK 1 inhibitors. I took Olive Leaf Extract at the suggestion of my immunologist during and after my time on Rinvoq and I would suggest getting the opinion of an immunologist or a knowledgeable ME/CFS doctor, when considering whether to take an antiviral, and if so, at what dose, while taking a JAK inhibitor.

 

[ryanc97]

Oh for sure. They prevent cytokines from signalling effectively.