Rux progress

[EPguy]

I've been on Rux for almost two months at a relatively low dose of 10 BID (20 total /day). Got the CBC yesterday. As seen in these plots it's starting to take effect. PLT is 427, Hb is down nicely. My Dr was encouraged at the last update that it was stabilizing and now it's heading down.

The lower values toward the left are on Besremi.

My next appt is in two weeks, he might leave the dose at 10. I'm half hoping I need more Rux to go after my new primary concern of my autoimmune disease.

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A question on being immunocomprimised, MDA Anderson has this:

"In cancer patients, being immunocompromised usually relates to the impairment of white blood cells, whether in number or function"

mdanderson.org/cancerwise/w...

I think leukemia affects the WBC function while our treatments affect the number. Many of us have low WBC on IFN, while one can see here that my WBCs have improved greatly on Rux. Does that mean IFN is more compromising than Rux? Usually Rux is considered the larger compromiser, if so is there a measurable factor? I plan to ask my Hem this question.

[hunter5582]

Glad to hear you seem to be responding well to RUX. Please do let us know what you learn when you talk to the hematologist.

You may find the recent article JAK2V617F allele burden in polycythemia vera: burden of proof (Moliterno et al) to be of interest. ashpublications.org/blood/a...

All the best.

[EPguy in reply to hunter5582]

Table 4 in there makes a good case for the combo Rux + IFN, with the most dramatic VAF reductions. This has been discussed here.

Missing from Table 4 is the Majic PV trial which showed new data on VAF with Rux and esp the 1st study to explicitly show VAF reduction correlates to event free survival.

[ritaandscooter1]

It appears that your WBC's if I'm reading it correctly were extremely low on Besremi. Surprised this wasn't brought up as a concern and a reason to lower dose? Could definitely have contributed to feeling on-going malaise and allowing other autoimmune disorders to develop. You should be feeling better on Rux with these numbers going up. Sounds like the low dose Rux is a good fit for you.

Keep track of how your feeling as well as these numbers go up or down. Adjust dose accordingly with this data. Numbers are looking great but how do you feel? Hopefully better on Rux! Take care Kerry

[EPguy in reply to ritaandscooter1]

The low WBC was why my Dr stopped at 140; he originally wanted to get to 200. I felt best at less than 100.

You can see the below range HCT and other counts at a minimum at one point, it was right after that I took the fateful life changing last dose. Could be the IFN was working too well when I fell into the abyss.

Re how I feel: I had a break in Apr, but now absolutely horrible, some episodes I'm squirming and twitching on the floor, all nerves on fire. Currently this is getting more frequent. Also my mouth is drying up, this leads to all kinds of trouble. The Sjogren's has taken over my life. I do get brief periods of relief. I hope the Rux might help, Jak-i's are recently recognized as helpful in autoimmune.

My lesson for all here is to watch really carefully for any signs of trouble while on IFN, including after vaccines. From the Bes label "fatal or life-threatening neuropsychiatric, autoimmune,... Therapy should be withdrawn in patients with persistently severe or worsening signs or symptoms of these conditions" This is real, but they don't emphasize how time critical this timing can be.

[STK52]

Hi, Thanks for sharing your journey. Could I ask what conditions do you have that qualifies you to be prescribed RUX pls? Did you try other treatment before that? I have PV and currently just on venesection and aspirin, but my allele burden is 80% so I am interested to learn more. Thanks!

[EPguy in reply to STK52]

I've been on HU, Bes, and now Rux. I've responded very well to all. Bes took my burden from 14-8% in 11 months. But you can see my posts my devastation while on IFN, starting with adverse vaccine reaction. Also see reply to Kerry above.

With all that you're likely best trying Besremi, it will likely get your burden down quickly. Reduced burden is most likely if you also get a full blood count response (CHR) Rux can reduce the burden quite well too based on recent reports, but maybe not as quickly.

Rux has an advantage that its worst adverse outcomes are not as permanent as those with IFN. But Rux is not available on-label in UK, is that right? Also as noted in this post, Rux users starting over 60% VAF were less likely to get a molecular response.

healthunlocked.com/mpnvoice...

[ainslie in reply to EPguy]

Rux is available in certain parts of the UK eg Scotland and maybe some others, although I think you can get it in England if special circumstances, eg other drugs failed. No doubt those living in England will have better knowledge.

[ainslie]

congrats, platelets can take the longest on Rux, 2 months isn’t long so likely to continue to Improve counts wise on that dose. 10 BID is a standard dose, 60% need more and 10% less, if 10 is working my two cents would be to be cautious about increasing, I don’t know this for sure but I suspect higher dose could mean higher risk of sides and immune suppression although I don’t think there is evidence currently on that. I know somebody on here, perhaps you mentioned that those on higher dose had better allele response but maybe they just needed more, that’s one for a Rux expert perhaps. My GP used to say to me less drugs the better, maybe something in that.

[EPguy in reply to ainslie]

I've posted on the end dose used in one Rux study, I also recall it's well over 10 BID.

Agree sides are proportionate to dose. A bit more immune suppression might be welcome in my case. But I expect my Dr will hold it at 10.