After 5 years on 135m Pega, my bloods are ok, my JAK2 mutation is down to 1%, they are very pleased and they are reducing my pega to 90.
The consultant was excited that my mutation was so low, she had never seen that before...
So, after 5 years on Pega its showing massive progress..
Not had a venesection in over 2 and a half years, no Hydroxy,
Attached my HCT numbers
Guess who is a happy bunny?
I suspect you’re the ‘happy bunny’.🤣🤣
That’s an excellent result. Hope everything stays the same on 90. Good luck.
That’s fantastic news. Gives us all hope for the future. You state your jak2 is down to 1%. Is that what they call the alle burden? How do you get yours tested? I wouldn’t mind asking my haem to test mine. Well done on the peg and thanks for sharing the good news with us
alle burden?, yes, they do a blood test twice a year..
If you're on or starting INF you should get occasional allele tests, esp before starting if possible. Then you can compare your allele burden (AB). If it's working there is usually some progress by the 2nd year, see the plot on my other reply. This is why many of us have switched to INF.
I will certainly be asking for one at next haemo appointment. Do you know if it’s the same blood test that genetically tests for the jak2 gene or is it a different blood test? I know the first one is quite expensive which maybe why the nhs might be cutting down on cost
I believe it's the same test to look for Jak2 yes/no and the AB%. Modern tests report the AB if any is detected. But it seems many labs and/or Drs do not fwd this info to the patient.
For the actual blood draw, in my experience they will fill extra vials for each category of test, (one each for CBC, CMP, AB% etc) so there will be at least one extra vial for the Jak2 test.
You're right about these costs, but I think it is getting cheaper with newer tech.
Great thanks. Will mention next appointment and count the vials😂
My goodness that is fabulous. You're actually on schedule with the other INF (Besremi), plot here, and you're in the lucky 20% who got under 1% in this trial.
Let's hope your consultant gets use to it as more of us become long timers on INF.
My 1st Hem said reductions are not possible, we're in a new world with INF finally getting its day in MPN.
What frequency of dosing are you at?
How are you feeling? Hope you're also getting that benefit.
<<Notably, allele burden decreased to <1% in 18/92 patients (19.6%)>>(I've seen this at 21% in other reports)
nature.com/articles/s41375-...
Hi my frequency is weekly 135mg , as I have 4 left the plan is to do 135 one week, 90mg the following week until my 135m has all been used. Even though my numbers are low, the symptoms don't go away, I am still tired and with brain fog, but there has been some improvement..
Hope that helps
And rightly so. Fantastic news.
That is great news! Also gives many of us who have chosen to go the INF route hope that we might experience a molecular response as well! Good luck on the 90 and may things stay great!
Looking good. Great to see a post form an actual patient who has been on interferon for at least 5 years and what you have experienced. I would like to hear from a lot of patients who have been on interferon for 5 years or more and what their experiences, both good and bad have been including those who had to discontinue the interferon for whatever reason. I am on HU for one year for PV Thinking of switching to Interferon from HU, blood counts very good on HU. Thanks for sharing, best to you.
Molecular remission! YEAH!!! 🐰🐰😃😃
I would not be at all surpised to see the PEG dose/frequency reduced even further.
Please keep us up-to-dateon how things go.
That’s great news! Your patience paid off. Hopefully you continue to do well.
That is wonderful news, sure to put smiles on all the people with MPNs on Interferons.
I am hoping that testing for allele burden will sometime be available to those of us who live in British Columbia, Canada.
Hope your fatigue gets better and the fog lifts when the dose is lower.
Please do keep us posted.
Congratulations happy bunny! So very very happy for you. That definitely does give the rest of us hope. I am currently waiting to be approved for interferon and it is so wonderful to receive hopeful news. Wishing you the very best.🐇
great news, so pleased for you. Maz
Just had my 5th covid jab
That's great news !
Congratulations on the molecular milestone! 🎉
Can I ask what your allele burden started out as? I'm starting year two of PEG.
Haematology Appointment Update 
Hello! Lastest Update-PV and Besremi
PV (JAK2) and Thrombocythemia
Not great news :-( ASXL1
