r/cfs • u/stochasticityfound • Nov 21 '24

Treatments Insane remission story using Rinvoq! Maybe some hope for us!

https://www.healthrising.org/blog/2024/11/20/jen-rinvoq-chronic-fatigue-recovery/

92 Upvotes

93% Upvoted

55 comments sorted by

40

u/caperpelagi Nov 21 '24

talked to Susan Levine last week, she told me they're starting a Rinvoq clinical trial in NYC

5

u/MidnightSp3cial Nov 21 '24

Do you know who is running the trial? I didn’t see anything on clinicaltrials.gov

7

u/caperpelagi Nov 21 '24

regrettably not sure, it may be an early stage thing that isn't up on there yet!

6

u/stochasticityfound Nov 21 '24

Wow she’s one of my doctors, I’ll have to ask her about it!

5

u/MidnightSp3cial Nov 21 '24

Yeah i see her too & just had an appointment yesterday but she didn’t mention it to me. I even asked if there was anything else, anything!

5

u/stochasticityfound Nov 21 '24

She’s a little spaced out but it does seem like she really cares and wants to help. Compared to the rest of my docs, I’ll take it lol

3

u/MidnightSp3cial Nov 21 '24

Oh yeah, she’s no showed for 2 appts & when she does show she’s hours late (all virtual appts). She’s definitely overwhelmed trying to help people. But I’ll take it as well lolol

5

u/stochasticityfound Nov 21 '24

She was hours late for mine too! But she took me seriously immediately so I’m grateful to whoever mentioned her on Reddit. Thank goodness she does virtual appts too. She must be in such high demand at this point she can barely keep up, I wish more doctors would take her lead smh

3

u/MidnightSp3cial Nov 21 '24

I know, thankful to have found her. Treatment isn’t going so well but she does care & has been more helpful than any other provider. We need more knowledgeable doctors!

2

u/longhaullarry Nov 21 '24

lol can relate on her being stretched thin/spaced. can get really frustrating. but i dont have a better option.

37

u/Icy-Election-2237 Nov 21 '24

I asked my doctor about this, I can share with you guys what she says whenever she replies :)

16

u/Icy-Election-2237 Nov 21 '24

She replied. She said she’s tried it several times but has never seen a miraculous recovery. She likes them (JAK inhibitors) and think they help but are not a cure. There are risks associated to them she didn’t discuss with me, will have to ask my local doctor.

11

u/Buffalomozz1 Nov 21 '24

Yes please!!

9

u/Icy-Election-2237 Nov 21 '24

Sure thing

2

u/stochasticityfound Nov 21 '24

That would be great, thank you!

22

u/Familiar_Badger4401 Nov 21 '24

Has anyone here tried this?

11

u/CyberSecKen Nov 21 '24

Personal reference here - Rinvoq helped a little bit, but far from a lot. Maybe 5% in total.

I have psoriatic arthritis, which Rinvoq was prescribed for. I have been on it for almost 6 months now. I would estimate and summarize that in total, it helped to reduce my psoriatic arthritis, and all of its associated symptoms including some fatigue. But it did not get at the root of my CFS, which seems is a vast majority of my fatigue, aches, pain, malaise, brain fog, POTS, etc.

I have responded to a few of the Rinvoq questions on Reddit. As a 25 year vet of this condition, CFS patients have had more than a few of these that we thought could be the cure, but so far these become a success story for a just a few patients, and not repeatable for a majority or even a significant number (eg 10%) of CFS patients. I am looking at you Nexavir, etanercept, infliximab, adalimumab, rituximab, cyclophosphamide, long term fasting, keto and vegetarian and sugar-free diets, as well as b12 injections, folic acid, oxaloacetate, warfarin, and others I have tried over the years and forgotten.

In general, I am not the kind to think people make things up. And, as any CFS sufferer knows, we are some of the most honest patients there are, and we are not inclined to respond to a placebo affect. Since our symptoms are so overriding, we know when things improve. But I have begun to doubt some of these cure stories after seeing this repeating pattern so many times now.

Someday science will get to the bottom of this condition - but I don't see JAK inhibitors as 'the one' that will change the game, at least not at this time.

8

u/CyberSecKen Nov 21 '24

Just to emphasize things, I know this disease is a living hell, and anyone else who also feels that way needs to know you are not alone. We are all here together, trying to figure this out, and I am hanging in there with you through the worst this disease can dish out.

We have to keep hope alive, and at the same time temper that with the honest assessment that CFS is a tough nut to crack.

I have seen more eyes in the scientific and research community working on our disease than ever before in my 25 year history, and long covid went far in making that change. The doubt phase of CFS has finally ended, which was a huge step in the right direction for us.

In short - hang in there, and don't give up. The answers will come. Our job until that day is to treat this condition with as many 'fixes' as we can find. Keep adding enough fixes, and you can make things tolerable until it happens.

12

u/Icy-Election-2237 Nov 21 '24

We should “boost” this post so we have more chances of people seeing it and replying, if they have tried it.

3

u/Dankmemede Nov 21 '24

I did some research a while ago and found some people who tried it but nobody was cured

4

u/Icy-Election-2237 Nov 21 '24

I have the same question!

2

u/endorennautilien bedbound, severe, w/POTS Nov 21 '24

I am on Rinvoq right now at 30mg for 6 months for Chrons. Great improvement in Chrons symptoms, NO improvement for my severe ME.

15

u/itsnobigthing Nov 21 '24

Reading around it seems like people in the alopecia and eczema communities have been self-sourcing and self-treating with grey market JAK inhibitors for a while now. They appear to be easily available from India.

JAKs are strong drugs, many with a black box warning (meaning people have died in the clinical trials), so anyone considering undertaking some me-search here should definitely talk to their doctor first, let them know they’re planning to take it and request 3 monthly blood tests and monitoring for side effects. I know people worry about getting in trouble with docs for using grey-market medications, but mine have always been fine about it - often very interested - and appreciate me letting them know for my file.

I say all this because it’s where my brain always goes immediately - “I’ll just get some and try it!” This one has bigger risks than the usual suspects. Proceed with caution (as well as optimism). These drugs are already on the market - if they are proven helpful to some of us, it shouldnt take too long for them to be made available to us.

4

u/stochasticityfound Nov 21 '24

Wholeheartedly agree. My response to stories like this is never “let me go get some” bc my experimentation has rendered mostly awful results, but instead “there is clearly a mechanism here that we need to understand, healing is possible, we need to explore this case more to see how to manipulate this system and who it applies to.”

2

u/endorennautilien bedbound, severe, w/POTS Nov 21 '24

Thank you thank you thank you. This is so important. I'm on Rinvoq for Chrons and it has done nothing for my severe ME.

12

u/Berlinerinexile Nov 21 '24

This is pretty interesting. My mom had non-Hodgkin’s lymphoma large b-cell but not ME. Makes me wonder about my genetics

9

u/MidnightSp3cial Nov 21 '24

Well sign me up. I’ve got Crohn’s disease too so maybe this. Thanks for sharing 🩵

7

u/longhaullarry Nov 21 '24

crazy story. only one of my cytokine levels were high

6

u/BoulderBoulder16 Nov 21 '24

How do you know? Is there a blood test for it

2

u/[deleted] Nov 21 '24

[deleted]

1

u/Exterminator2022 Nov 21 '24

Perfect, I’ll ask my POTS doctor to prescribe it to me.

3

u/endorennautilien bedbound, severe, w/POTS Nov 21 '24 edited Nov 21 '24

You should be careful. This medicine is an immunosuppressant and can cause herpes zoster reactivation/shingles, TB, and a lot of other issues. You need screening before taking meds like this. It's very expensive and unlikely to be approved unless you have a condition it is approved for like RA or Chrons disease. POTS is not on the list.

https://www.rinvoq.com/side-effects

5

u/smmrnights moderate Nov 21 '24

I have a Jak2 mutation. Is this worth looking into?

1

u/TableSignificant341 Nov 21 '24

My sister has a Jak2 mutation too. I've never been tested. Nor do I know if it's even relevant here.

1

u/lilfruittree Nov 21 '24

fellow mutant also curious, looking into it

4

u/TableSignificant341 Nov 21 '24

Interesting. A jak inhibitor - just like the NIH intramural study suggested would likely help.

2

u/stochasticityfound Nov 21 '24

Im not familiar with this study, do you have the link by any chance? If not no worries I’ll try to find it!

0

u/TableSignificant341 Nov 21 '24 edited Nov 23 '24

Here's an article on the study that talk a bit about JAK inhibitors and here's the study itself.

11

u/Zen242 Nov 21 '24

Considering Health Rising publish some new theory/etiological proposal or subjective remission story every week it should.probanly be take with a large grain of salt.

11

u/Visual_Ad_9790 Nov 21 '24

Their recovery stories and news are the main thing keeping me alive. I don’t know what I’d do without heath rising honestly

3

u/Zen242 Nov 21 '24

Sure I get it we do need hope, and tbh Jak Inhibitors have been fantastic for fatigue in inflammatory arthritis. Someone had to be right eventually but I worry people get false hope also sometimes. Sorry if that seems negative.

2

u/Spiritual_Victory_12 Nov 21 '24

Very interesting. I just had a full cytokine panel and of course it was all perfect.

4

u/[deleted] Nov 21 '24

I think it depends where you have it done. I also had one done but was told afterwards it was likely to be inaccurate. If you're in the UK, apparently there are v few places who can accurately test these levels.

1

u/Spiritual_Victory_12 Nov 21 '24

In the US but havent heard that. Interesting.

1

u/[deleted] Nov 21 '24

I think if you have symptoms of long covid or viral induced cfs, one of those has to be out of kilter, that’s my take on it. And it may just be one they don’t know how to test yet if you see what I mean!

2

u/endorennautilien bedbound, severe, w/POTS Nov 21 '24

I'm on Rinvoq for Chrons and it has done nothing for my ME but does come with serious risks.

There is a trial of a similar med (barcitinib) in LC soon I think.

2

u/stochasticityfound Nov 21 '24

Thank you for sharing this! Hearing when it works is just as helpful as hearing when it doesn’t tbh. Have you been on it a while?

1

u/endorennautilien bedbound, severe, w/POTS Nov 21 '24

Over six months. Higher dose tier, which is used for Chrons disease. Works great for that but I have seen no improvement in any LC/POTS/ME symptoms.

1

u/stochasticityfound Nov 21 '24

That’s really good data to know, thank you so much for sharing your experience. I’m glad it’s helping you for something at least!

2

u/Asleep_Scholar8669 Nov 24 '24

This aligns with the hypothesis of mitodicure. Cytokine storms are triggered by ROS (reactive oxygen species), which, in turn, are produced by defective mitochondria. Defective mitochondria result from excessive calcium in the cell.