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Would you try Baricitinib if you could get it or wait for the more targeted JAK STAT1 inhibitors?Hi
Hi
I’m in the uk.
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Would you try Baricitinib if you could get it or wait for the more targeted JAK STAT1 inhibitors?Hi
Hi
I’m in the uk.
Yes I'm planning on trying it when if we learn more about which dosage could be effective for ME. If it's just 3 days of a higher dose I imagine it wouldn't be damaging? I don't know though.I read in a different platform someone say quote “KDM expect his patients take Bactrinib at least 6 months, that's when most of the effects are noticeable.”
(Apparently, KDM is a ME/CFS doctor or a clinic somewhere)
Which means I can’t do that because I have that awful drug hypersensitivity intolerance issue to Baricitinib (same issue with several but not all medications) . However I did find that if I combine a low dose of dexamethasone with Baricitinib then the awful drug intolerance sensations go away. I checked to see if humans had already tried that combination. And it is done for people in the anccute inflammatory Covid stage. So at least I know it’s not unheard of.. but there’s no way I could do that for six months. As too hard on the body. But I’d do it for a few weeks.
So, I’m liking what you are saying about Rob Phair’s escape velocity being needed with a higher dose. Maybe Baricitinib’s dose range is too low for ME/CFS. It’s broadness is why it’s lower perhaps.
Reading into what you say, we aren’t trying to turn down immunity to get rid of rheumatoid arthritis or other inflammatory issues which Baricitinib is designed for. We are trying to turn off the shunt long enough it clicks innate immunity back to natural homeostasis . Which if we boosted the dose, it may actually work.
I’m not sure I want to be the first to try that though lol
Do you have Baricitinib?
I don’t know what escape velocity dose would be but for people with acute COVID inflammatory stage they took 8mg for 14 days. I read a few studies and 8mg appears to be the highest dose I’ve seen so far.Does baricitinib take 6 months+ to work at the dosage of 2 or 4mg as prescribed for autoimmune conditions or much faster if at the dosage needed to escape itaconate shunt? Do we know what that dosage is yet?
So it could either be a higher dose or longer duration that turns off the shunt? Do we know whether Baricitinib, Filgotinib or Rinvoq is the best suited for our purposes?We are trying to turn off the shunt long enough it clicks innate immunity back to natural homeostasis . Which if we boosted the dose, it may actually work.
I’m thinking it will be either Filgotinib or Rinvoq as they are more potent and are more narrowly targeted. I’m definitely thinking higher dose as the idea is to turn off the Itaconate shunt “positive feedback loop” (Robert Phair talked about) which was caused by interferon alpha signalling too much. So I don’t think a rheumatoid arthritis maintenance dose would be high enough. Because they are doing a balancing act between having enough immunity to be able to be out in public and enough immune suppression to stop rheumatoid arthritis symptoms caused by these signalling pathways. So their dosage is partially allowing some signalling to carry on. We don’t want that, as are trying for only a short time to turn that off as much of the signalling pathway as possible instead. Which specific pathway it is seems to be that ones that Filgotinib or Rinvoq target hence called JAK STAT1, but Baricitinib covers those same pathways and more, which could be why it’s not as potent (JAK STAT 1 & 2 although I’ve read 1 & 3)So it could either be a higher dose or longer duration that turns off the shunt? Do we know whether Baricitinib, Filgotinib or Rinvoq is the best suited for our purposes?
I read a very large Rinvoq FB group and while some start at 15 mg and others start at 45 mg (and stay on 45 for about 3 months) patients don't report much difference in side-effects and frequency of infections and reactivated viruses whether they are taking 15 mg, 30 mg, or 45 mg. So while our strategy would be different, it is interesting that the side-effects related to different doses doesn't seem to be that different.So I don’t think a rheumatoid arthritis maintenance dose would be high enough. Because they are doing a balancing act between having enough immunity to be able to be out in public and enough immune suppression to stop rheumatoid arthritis symptoms caused by these signalling pathways. So their dosage is partially allowing some signalling to carry on.
I have been offered filgotinib by my gastroenterologist to prevent future IBD-flares, to be take indefinitely.
Is there any news about JAK-inhibitors as a treatment for ME/cfs? Surely it must have been tried by quite a few patients by now.
Note: the 3 patients with substantial improvement or remission had these results after stopping. I think that more people will be experimenting with JAK 1 inhibitors and hopefully there will be more news in the future—the sooner the better.I haven’t heard any more apart from Jannet Dafoe saying Robert Phair and Ron Davis know of 2 people who “greatly improved “ on JAK STAT inhibitors
UPDATE to all who are followingNote: the 3 patients with substantial improvement or remission had these results after stopping. I think that more people will be experimenting with JAK 1 inhibitors and hopefully there will be more news in the future—the sooner the better.
Thanks for sharing this— the more personal experiences we hear the more we learn. I am in touch with an academic researcher who is interested in the properties and effects of JAK inhibitors and learned that the dose of Rinvoq that is equivalent to 200 mg of Filgotinib, is 15 mg—the lowest dose of Rinvoq available.Has anyone else tried boosting the dose of any JAK beyond its normal dose? Or am I a lone wolf