Hi all.
Another good report on Ruxolitinib.
healio.com/news/hematology-...
I'm now 10 weeks on in the change from Hydroxy to Ruxolitinib and doing well.
Next blood results in one week - nowhere near a venisection yet.
Happy and healthy new year to you all.
B.
Good to see progress. Confirming that Rux is effective in non-prior treated pts at 6 months. This is the detailed paper it comes from:
ash.confex.com/ash/2023/web...
It's hard to get clear conclusions from it since the P values of many data points are high, meaning low statistical significance. For example BAT "failed to impact on hemoglobin". This does not match common experience nor their actual result, but a high P may explain this.
But one count has a good P, PLT. I've been on all three therapies, HU, IFN, Rux and they found what I also experienced, PLT was lower on BAT: 254 with BAT, while 386 on Rux. My respective counts are very similar to these.
One confusion with some of the Rux studies like this one is BAT includes both HU and IFN. A separate comparison with these BATs would be helpful.
This is a 6 month interim report so any VAF results would not be signif; they didn't report this anyway.
Happy New Year EPguy!
Always nice to hear from you. How are you feeling health wise (aside from the Autoimmune problem) on the Rux? Do you have many side effects and are your numbers controlled well? How would you compare it to the HU and IFN? Just curious as maybe someday I will try this. The Rux has been getting a lot of attention lately. Best regards! Kerry
The Rux is quite uneventful. My counts have held well on all 3 therapies, could be my low VAF and single mutation makes things easier, but could be who knows.
Doses were~ 500/day HU, 140/two weeks Bes, 20BID Rux.
I actually felt best on HU. But the split nails and other known sides were a pain. IFN worked great on counts and VAF (14-8%) . But once it went above ~70mcg I got malaise ect. We see here the wide dosage variations, note the current aggressive dose trials; finding the right dose is a work in progress for which I paid dearly.
Rux seems like the 60's hippie song "the ones(pills) that mother gives you do nothing at all". It's gentle and uneventful for me. IFN usually lets you know you're doing something.
Unfortunately for me my aside is the main course, and overlaps in time with Rux therapy. So I've been trashed while on Rux, but I can't blame Rux for this time coincidence. I do miss grapefruit, one can indulge on IFN.
I should have a VAF soon to know whether it is changing on Rux.
Thanks for the info regarding all 3 drugs. Sounds like our bodies respond very similar to the various drugs. I too felt the best on HU, the 2 months I was on it. IFN was the absolute worst on the 22.5mcg dose of PEG. My body definitely treated it like a toxin. Like you I have one mutation, no bad drivers but unlike you my AB is over 90%. I'm still on the 2 aspirin a day and phlebotomy every 3 months or so. This regimen has worked thus far for over 20 years but who knows how long. My only symptoms are mental fatigue that comes and goes. (also low iron) My biggest treatment is the daily exercise (1 to 3 hrs daily) which always gives me more energy and I feel better. I treat the low iron by taking a iron pill (27mg) every Sunday. It's just enough to make me feel better without raising my blood levels too much. Good news that the Rux is uneventful/gentle for you and keeping your numbers in range. Take care Kerry
You're in a good place with no urgent need to change anything. Rux would probably obviate the phlebs and iron issues. It can reduce the VAF, but in prior posts I've noted reports that found Rux less effective on avg reducing from higher VAFs. But your high VAF doesn't seem to make trouble. Why did yo stop the HU?
Some minor features (or bugs) with Rux, I've had slightly fuller hair and held weight up. Both are known Rux effects, for me no worries about weight loss is nice. It might actually have made me look younger if comments on our one and only social event of 2022 last Aug are indication. Could be evidence of Rux anti-inflammatory effect at work inside. There are studies in Jak-i's to treat autoimmunes, but I can't say Rux is working there.
I recall exercise bringing relief with the PV in my prior life a year ago. It's now harder to do.
Yes, I'm hanging where I am with the present regimen until there is a need for added medication. I quit HU because I spend the winters outside in Arizona and get sun exposure swimming all the time. Another reason, was the family background of skin cancer-dad died of it and I have had my share of mole removal. Will go back on it though for a future knee replacement to lower counts.......dreading this of course but headed down this road with one knee bone on bone. UGH! Love the fact that the Rux is making your hair thicker and people comment on you looking younger!!! Makes me want to go on it for those reasons alone! 😂 Ya the high AB hasn't appeared to make a difference on how I feel. Maybe I have higher inflammation as evidenced by the osteoarthritis in that bad knee and Dry eye problems-Blepharitis. Finally got the eye problem somewhat fixed by a dry eye expert here in Az. Thank god! Tired of on-going styes. Glad the Rux comes with some positive characteristics for you. Take care...Kerry
Thanks for posting. This is reassuring to us patients on Rux.
What is your current dose of Rux?
Ruxolitinib
Ruxolitinib or Interferon
Ruxolitinib 
Ruxolitinib Relief Trial.
Ruxolitinib
