Tofacitinib (Xeljanz)

[dreamydays]

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?

 

[imitate-past-reign]

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]

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]

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.

 

[msf]

Valganciclovir wouldnt stop most infections.

 

[Wonkmonk]

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.

 

[Daffodil]

@dreamydays hiya. did u ever end up trying the drug?
thanks

 

[Daffodil]

i think tofacitinib with FMT might work

 

[dreamydays]

@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]

@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.

 

[dr. Arf]

I am sorry @dreamydays but did you try:
tocilizumab
Or
tofacitinib?

2 very different drugs