JAK2 results

[Cityreach]

HiHoping someone may know the answer to this as I do not have appt till Aug to ask.

When I was first diagnosed with PV in June 22 and had first JAK2 Bloods test my results were 44.65 then a year later around July/Aug 23 had another JAK2 blood test and it had increased to 56.45 hence my decision to start Pegasus in Aug 23 first 45mcg forthnighty then few month ago increased to 45mcg weekly as HCT was 42.9 my target is 43 and I had a venesection couple weeks prior to that as was almost 43 then too so Guys asked to increase dosage

Last month had my 3rd JAK2 Blood test and results back today and are 44.07 which is good news my question is could this be just luck on the day and results lower or is this a definite decrease due to Pegasys. Does it work on how hydrated etc you are like normal bloods tests where you could get different results later same day

I am hoping it can be confirmed this is purely due to Pegasus,

Thanks

Jill

[hunter5582]

If you had a venesection a few weeks to increasing your dose of Pegasys and that was several months ago, then it is like a combination f the residual benefit of the venesection and the increase in Pegasys dosing. This is very good news. Pegasys takes time to work and it certainly seems you are on the right path. You may find that 45mcg/weekly will do the job or may need a bit more Pegasys. You may also choose to keep the Pegasys where it is at at take the edge off the erythrocytosis with the occasional venesection. That is what I am doing. My max dose of Besremi is 175mcg but about 0nce/year the HCT creeps up above 45%. I am currently averaging about 1 venesection/year, which is way better than when I was doing them every three weeks.

Wishing you success moving forward.

[Cityreach in reply to hunter5582]

Thanks Hunter for your reply, I am always wary of dose increase in case it brings side effect, I was originally asked to increase to 90mcg fortnightly but chose 45mcg weekly to keep dose lower at each injection. Your knowledge is always appreciated. I wish you well on your journey too

[EPguy]

You're noting two similar sets of numbers in the 40's, HCT and allele burden. HCT does vary with daily hydration etc. But the allele burden (VAF) is very unlikely to jump around from daily activities. A~22% decrease after 10 months of IFN is quite reasonable and unlikely to have happened without the IFN. The rate normally slows down after the first year but most likely would continue for some years to come.

HU can also provide this sort of reduction, but is less durable after about 2 years.

[Cityreach in reply to EPguy]

Thanks EPguy

I didn't realise you saw more of a decrease in the first year only but I am pleased it going in right direction. Wishing you well and thankyou for taking time to reply

[EPguy in reply to Cityreach]

Actually I got only 11 months on IFN, 50% VAF reduction, but it ended badly for me.

This plot familiar to many members shows a typical reduction as was seen for Besremi. A fast 1st 6 months and slower but still good reductions after that. It shows about 32% reduction after 10 months and clear slowing at 2 years. PEG is similar. Of course each person will usually see a variation of this including no remaining mutation at all for certain pts

Bes VAF

[Cityreach]

Thanks for that data have a good day

[GardNerd]

My MPN specialist told me that the interferons do most of their work on the allele burden in the first three years. My second year decrease was much bigger than my first year decrease, so it can vary (as EPGuy said). My allele burden was very high to start with (88%), so I was okay being aggressive with my dosing (of Besremi). As long as I could tolerate it, I increased the dose to the max. Now I’m cycling back down, because the platelets got just below 100. Good luck to you!

[Cityreach in reply to GardNerd]

Thankyou for your time to reply that's good to know I thought I was relatively high at start 44.65 but you was much higher at 88% what are you now if yiu don't mind me asking, glad it is working for you

[GardNerd in reply to Cityreach]

I went down to 80% after a year of Besremi and then to 35% after two years. I was thrilled!

[Cityreach in reply to GardNerd]

Wow that is good , I wish you well