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Tofacitinib (Xeljanz)

dreamydays

Senior Member
Messages
182
Location
United Kingdom
In Montoyas new lecture he posits the use of the drug tofacitinib (Xeljanz). This is in relation to the general cytokine behavour found in severe patients. I have already found a supplier and its aviailable from India and Turkey at around £450 per month. I feel like this would be a short term treatment if I were to try it as I have been at all levels of ME, very mild to bebdound. So I feel if it pushed me up a level I would stop the treatment and try and sustain it. Does this drug fit in with anyones current thinking of the mechanism of our disease?
 
It could help the subset he described, because he has access to all their pertinent information. But it cannot be applied to a population at large.

JAK-STAT inhibition creates an environment conducive to CFS, not vice-versa. The most promising failed drugs for CFS (Ampligen, Staphypan, autologous t-cell transplantation) all enhance IL-2 production, not diminish it.

It's oral and it's approved and requires no effort: that's why it is being recommended.
 

msf

Senior Member
Messages
3,650
I don't think it is a shot in the dark like the last poster suggested ( in terms of it being an effective ME treatment in the future), but I don't think it's going to be effective as a short term fix, and it will come with the consequence that those taking it will be even more susceptible to infections ( as would have been the case with rituximab if it had worked). Like rituximab, it's not the kind of drug that should be self-administered, as it can cause neutropenia.

Better to wait to see if filgotinib is trialled, as it seems to have a better safety profile.

If you need something to help you go up a level right now, I would suggest getting your gut and sleep right - if you haven't tried either the fodmap diet ( restricted version to begin with) or trazodone (for sleep) I would definitely try them first.
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
it will come with the consequence that those taking it will be even more susceptible to infections

As I understand Dr Montoya, he wants to use it in combination with Valgancyclovir. The Valgancyclovir gets the infection under control (supposedly a herpes virus) and the Tofacitinib reduces inflammation and cytokines on a broad basis.

As I understand his latest study, it would probably only be used on severe CFS patients, because mild and moderate cases don't have elevated cytokines.
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
It would be effective against most kinds of herpes virus. Maybe Dr Montoya first checks if people respond to Valgancyclovir and then adds anti-inflammatory drugs. I don't know.
 

dreamydays

Senior Member
Messages
182
Location
United Kingdom
@Daffodil Yes, I have tried it and many others. Tocilizumab did not improve me at all, I did get a UTI which is a common side effect. My partner has ME as well and she just didn’t feel quite right on it. I literally noticed nothing no side effects. It was 100% genuine, I have the box still. It is delivered cold chain in a box with ice packs. Don’t mix a FMT with it as your chances of an infection are higher. I’m really sorry, I continue to try new medications all the time.
 

Daffodil

Senior Member
Messages
5,873
@Daffodil Yes, I have tried it and many others. Tocilizumab did not improve me at all, I did get a UTI which is a common side effect. My partner has ME as well and she just didn’t feel quite right on it. I literally noticed nothing no side effects. It was 100% genuine, I have the box still. It is delivered cold chain in a box with ice packs. Don’t mix a FMT with it as your chances of an infection are higher. I’m really sorry, I continue to try new medications all the time.
wow. incredible. thanks for posting. i was also wondering if FMT could be dangerous on it. I did get to 30% improvement with FMT but it did not engraft.