Allele Burden

[shiftzz]

Quick update

My interferon is currently 135 per week, its been extended from 7 to 10 days, numbers are all ok HCT 0.455, not concerned.

My Allele Burden results

Jan 2021 2.04%

March 2023 1.62%

Slightly elevated LFT

ALT 54 down from 60 down from 66

GGT 64 down from 94

eGFR 89

Ferritin 34

Stopped drinking for a month, not that I drank a lot, about 2 pint of beer a week..

Doe PV or Interferon affect the liver?

[hunter5582]

It looks like things are going rather well. Elevation in LFTs is pretty common with the interferons. Mild elevations are not considered a cause for concern. "Be kind to your liver" is a good idea.

Wishing you continued success.

[Wyebird]

good news on the increased length of time between jabs. Long may it continue. I’m two years in and still increasing the time span. I’ve just gone to 90 units every 28 days.

As for liver I’m sure it does affect the liver. All meds do. Quality of life is a fine balance.

[ainslie]

I was chatting with a patient at the Oct conference in New York, he is on Peg and drinking a bit, his liver numbers were quite high, he reported when he reduced his alcohol intake the liver numbers came down a lot, it seems the combo of Peg and alcohol is a bit hard on the liver, generally docs say keep to 14 units or less and have 2-3 dry days in a row to rest the liver, maybe worth a try

[Mostew]

maybe look into natural herbs / support remedy’s for liver ? Of course checking with consultant they are ok to take with interferon

[Mortysdad]

I have heard others talk about the allele burden but not my doctor. Was not sure of it's meaning or significance. I found this short clip that makes easy understanding of it. Sounds like for you 1.62% is very good. Does anyone know if the allele burden goes by a different name as I do not see it listed on my any of my bloods tests or my bmb. Thx!

Https://patientpower.info/myeloprol...

Update: I did find this however. Could this be it?

Positive. JAK2 V617F mutated DNA

was detected and measured at 22%

of total

JAK2 DNA.

[Ginestragiallo61 in reply to Mortysdad]

Thank you

[Blonde25]

That's good news for you shiftzz.

Could you tell me how long you have been king the 135 micro gram dose and how long it took to kick in . I'm on 135 micro gram , been on it for about 12 weeks , feeling a bit better in myself and I appear to have adjusted to the first side affects I experienced. The hospital also did a JaK2 blood test and I will see them at the LRI on 1st march to discuss my results

Thanks

[shiftzz in reply to Blonde25]

Hi

I started Interferon in October 2017, I was on a weekly dose plus I was on Hydroxy and venesections. My last venesection, number 67 was 4 years ago and I stopped Hydroxy in 2019, Interferon took about two and a half years. They are very strict to keep my hct to below 0.45. At the moment I am possibly a little anemic so on folic acid.

My interferon took along time to work, I was concerned and suggested increasing the dosage, but they asked me to keep on going..

I hope you get faster results than me...

[Blonde25 in reply to shiftzz]

Thanks , I've been on peg for a year now but they adjusted the dose about 12 weeks ago now to 135 a week . I've just adjusted to the higher dose and I'm feeling a bit better so I'm hopeful it may be make a difference to my blood levels . I've also beeen going for regular venesections every 6 weeks to bring my Heamacrit down , it had fell slightly last time but was still 49.6

I really hope it's starting to work for me because the thought of having to go on that tablet makes me anxious.

Anyway all the best 😊

[shiftzz in reply to Blonde25]

I've had over 65 venesections, my consultant used to send me if my hct was even slightly over. My target is 45. If I was 45.1 I would have a venesection.

My interferon took time, i did make a mistake of injection in the same spot, not a good idea.

Anyhow, hang on on there...