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

[Marylib]

Does anyone know how to get it?

 

[dr. Arf]

Does anyone know how to get it?

From The second blog:

“Cytokine panels can theoretically be ordered by patients”
- Quest
- Labcorp

in Europe:
– Red labs from Belgium.
- there might be some more maybe in Germany

 

[MonkeyMan]

Does anyone know how to get it?

If by "it" you mean a cytokine test, check out https://www.holisticheal.com/cytodx-cdx-test-kit.html

If you mean Rinvoq, I don't know.

 

[MonkeyMan]

I did some research on Rinvoq. As others here have pointed out, it's a nasty drug that could put you in the hospital or even 6 feet under if you're not careful.

But Rinvoq has a cousin who is gentler and nicer (i.e., safer), called Sotyktu (deucravacitinib). Sotyktu is indicated for the treatment of psoriasis. With its ability to tamp down an overactive immune system, I wonder if Sotyktu could potentially help some ME/CFS patients?

 

[Sushi]

I did some research on Rinvoq. As others here have pointed out, it's a nasty drug that could put you in the hospital or even 6 feet under if you're not careful.

Yes, much care is needed: lab tests before, regularly during, and then after finishing the protocol—for safety. You need to check that you’re not harboring latent TB for instance before starting. Also, it is important to protect yourself against exposure to any infections, perhaps to take an anticoagulant and things like Lysine and Olive Leaf Extract or other mild anti-virals, anti-fungals for extra protection. It is not a drug to take without your own research and preparation.

 

[cfs since 1998]

I did some research on Rinvoq. As others here have pointed out, it's a nasty drug that could put you in the hospital or even 6 feet under if you're not careful.

But Rinvoq has a cousin who is gentler and nicer (i.e., safer), called Sotyktu (deucravacitinib). Sotyktu is indicated for the treatment of psoriasis. With its ability to tamp down an overactive immune system, I wonder if Sotyktu could potentially help some ME/CFS patients?

That is interesting because a genetic allele associated with ME/CFS, HLA-DQB1*03:03(1), is also associated with psoriasis(2,3). A study in Taiwan found psoriasis patients had a 50% increased risk of ME/CFS, but the risk was eliminated when the psoriasis was treated with UV radiation or immunosupressant drugs(4).

References:
(1) Lande A, Fluge Ø, Strand EB, Flåm ST, Sosa DD, Mella O, Egeland T, Saugstad OD, Lie BA, Viken MK. Human Leukocyte Antigen alleles associated with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Sci Rep. 2020 Mar 24;10(1):5267. doi: 10.1038/s41598-020-62157-x. PMID:32210306; PMCID: PMC7093502.
(2) Ozawa A, Miyahara M, Sugai J, Iizuka M, Kawakubo Y, Matsuo I, Ohkido M, Naruse T, Ando H, Inoko H, Kobayashi H, Ohkawara A, Takahashi H,Iizuka H, Morita E, Yamamoto S, Hide M, Taniguchi Y, Shimizu M. HLA class I and II alleles and susceptibility to generalized pustular psoriasis:significant associations with HLA-Cw1 and HLA-DQB1*0303. J Dermatol. 1998 Sep;25(9):573-81. doi: 10.1111/j.1346-8138.1998.tb02461.x. PMID:9798343.
(3) Cassia FF, Cardoso JF, Porto LC, Ramos-E-Silva M, Carneiro S. Association of HLA Alleles and HLA Haplotypes with Psoriasis, Psoriatic Arthritisand Disease Severity in a Miscegenated Population. Psoriasis (Auckl). 2021 May 10;11:41-51. doi: 10.2147/PTT.S258050. PMID: 34007822; PMCIDMC8121669.
(4) Tsai SY, Chen HJ, Chen C, Lio CF, Kuo CF, Leong KH, Wang YT, Yang TY, You CH, Wang WS. Increased risk of chronic fatigue syndrome followingpsoriasis: a nationwide population-based cohort study. J Transl Med. 2019 May 14;17(1):154. doi: 10.1186/s12967-019-1888-1. PMID: 31088562;PMCID: PMC6518753.

 

[Violeta]

The possible side-effects do not make it sound worth trying.

 

[dr. Arf]

Survey of n= 35 Self-reported anecdotes ME (incl LC with PEM) patients of All different JAK-inhibitors
- Together with another patient, I took this survey and added all the anecdotes we could find online
(if possible asking for additional information thru DM, etc)

49% had significant improvement (= more than 10%)
20% did not benefit at all *

*Inclusion criteria:
- PEM one of the core symptoms
- 2nd hand anecdotes w/out dosing info + duration info excluded
- Trials < 1 month - with nó improvement - excluded (too short treatment duration)


Remarks:
A) Relative high amount patients with autoimmune comorbidities - they have easier access to JAK-inhibitors
- so improvements in fatigue can have confounders
B) Not aware of any self-reported permanent worsening ME symptoms after trial
C) Some patients did STOP JAK-inh despite improvement because of side effects or adverse event
E.g. liver issues, elevated creatinine, gut inflammation, low tolerance medicine in general, infection, Low white blood cells, etc
- Filgotinib might have least side effects (?)
D) Most patients took for > 4 months
- Part of patients stopped protocol because of financial reason (no prescription, no insurance coverage)
E) Some of the anecdotes & results were reported / confirmed by an ME-specialist


Disclaimers :
1) results might be too ‘optimistic’ - because of:
- positive bias - easier to find self-reporting positive anecdotes (?)
- negative experiences less likely to respond (?)
- Inclusion Mild ME + short duration LC might skew results
2) ‘Low-quality’ survey : meaning n=35 data collected online (when possible with direct contact for details)
3) JAK-inhibitors are strong immune suppressors/modulators with side effects - should be monitored with blood panels from Lab, etc. - under surveillance of a doctor

 

[dr. Arf]

Survey of n= 35 Self-reported anecdotes ME (incl LC with PEM) patients of All different JAK-inhibitors

@Phoenix Rising Moderators I cross posted this message for more exposure and maximum information sharing. If it is appropriate, you can merge or make a link within both threads, delete, etc

See post in thread 'Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?'
https://forums.phoenixrising.me/thr...future-of-cfs-me-treatment.54175/post-2471547

 

[Treeman]

Survey of n= 35 Self-reported anecdotes ME (incl LC with PEM) patients of All different JAK-inhibitors

Is there any indication of dose rates?

 

[dr. Arf]

Is there any indication of dose rates?

Yes, from the patients we could get that information following dosage per dayr

• Tofacitinib 5 BID (a few 10 mg)
• Rinvoq 15 mg (a few 30 to 45mg)
• Baricitinib 4mg
• Filgotinib 100mg and 200mg

There are 2 patients that went above the maximum advised dosage per day For a short period.

have not found a correlation from this small anecdotal sample.

 

[Treeman]

Tofacitinib 5 BID (a few 10 mg)

What is, BID? Thanks.

 

[dr. Arf]

What is, BID? Thanks.

Bi-Daily
2x / day

 

[Treeman]

Here is the personal story of the lady that is in remission from Rinvoq.

I just returned to this story and with my limited understanding did it appear it acted like a biological.

It left her with low white blood cells and when they repopulated were they non corrupt? Thanks.

 

[dr. Arf]

It left her with low white blood cells and when they repopulated were they non corrupt?

What do you mean with white blood cells being non-corrupt ?
- you mean naive immune cells’ ?
- e.g. naive B-cells?

 

[Treeman]

What do you mean with white blood cells being non-corrupt ?
- you mean naive immune cells’ ?
- e.g. naive B-cells?

I’m trying to say once the white blood cells grew back they were functioning as they should. Before the medication the white blood cells could have been producing autoimmunity etc. causing the fatigue

 

[dr. Arf]

Before the medication the white blood cells could have been producing autoimmunity etc. causing the fatigue

That could be a theory. I know various more patients who have tried similar JAK-inhibitors, but none with such a remission story.

There could be something to it that you need to suppress the immune in such an extreme way that the immune cells gets a reset.
- which might explain that it hasn’t been more effective for other patients - as doctors would always want to prevent this strong immune suppression
- it might also explain why other immune suppressing therapies have been effective in xx% of cases (Cyclophosphamide, Daratumumab, Rituxan, etc)

 

[Treeman]

There could be something to it that you need to suppress the immune in such an extreme way that the immune cells gets a reset.

It’s a high risk strategy. I’m sure there will be some that could make their health permanently worse.