Myelofibrosis

[caroline_284]

I have been on 90mcg weekly for about 2 years but have been told my dose may have to go up to 135mcg because my allele burden Is going up and my spleen has enlarged a bit. Does anyone have experience of more severe side effects from this higher weekly dose? I have MF .I had hoped that perhaps a bit longer on my present dose might show some change.I have heard it can take several years for allele burden to come down

[Paul123456]

Sorry that that Pegasys not working as you had hoped. It does take time.

How high is your JAK2? And do you know what stage of MF you are? Pegasys works best at early stage. If later stage you could ask your Hem about combining Pegasys (at say 60 or 90 mcg weekly) with Ruxo? Ruxo helps clear inflammation that may block the efficacy of Pegasys. I assume you don’t smoke? This can cause inflammation that blocks Pegasys

Have you tried an anti inflammatory diet? Some of us are on NAC which may help reduce inflammation and symptoms (in trials)

And have you had a full myeloid panel test looking for any additional mutations?

Sorry for all the questions

Best Paul

[caroline_284 in reply to Paul123456]

Thankyou for your reply. I was diagnosed low to intermediate primary mf march 2020.i have been on 90 weekly peginterferon. My allele burden went up from 57 to 64 in the last year but I am just waiting on a recent blood test where I am just worrying about it going up again and the consultant has said today that they would then want to put me on the higher dose. I haven't had a full myeloid panel and I haven't smoked for years.

[EPguy in reply to caroline_284]

Paul's suggestion on the combo (PEG + Rux) is worth asking Dr about. The idea is to have a reduced dose of one or both when used together. It is providing good results for a few members who did not get enough response to just one of them.

--

Here is the trial of the combo with reduced PEG dose:

"The median JAK2 V617F allele burden decreased from 47%... to 12%... 41% of patients achieved a molecular response"

"(most of the ) patients were previously intolerant of or refractory to PEGIFNα2"

MF has good odds: "We observed no difference in the JAK2 V617F allele burden change between patients with PV and patients with MF "

ncbi.nlm.nih.gov/pmc/articl...

[william-Indo in reply to EPguy]

Yes, i am in this combo for 8 months already and the result is amazing.

Almost no issue with the side effects.

Just pain in muscle that eliminate with vitamin D3

[caroline_284 in reply to EPguy]

Thank you I will suggest that at my next appointment

[william-Indo]

I have PV and treating with combo Jakafi 20mg twice per day and Pegasys 135mcg week for 8 months alreadyAlele burden is 92%

CBC is great and no big issues with the side effects

If you are MF, you are qualify for BMT, as curative drug.

Talk to your doc for better option.

Wish you all the best

[caroline_284 in reply to william-Indo]

Is CBC The cannabis oil?

[EPguy in reply to caroline_284]

CBC is usually Complete Blood Count, the numbers we all watch.

[caroline_284 in reply to EPguy]

Oops sorry. I was hoping there was another aid to the medication !

[JennyCR]

I increased from 90mcg to 135mcg weekly at the beginning of the year. My platelets are mid 300s but I had a stroke last year and haemo wants them under 300. I am just more fatigued than ever. He wants to increase to 180mcg but I resisted so he's going to do another BMB in January.

[caroline_284 in reply to JennyCR]

Thank you. That's helpful to know. One thing I have noticed is my anxiety is heightened at the moment and making my blood pressure readings high which makes me more anxious each time I'm told to do another reading.does anyone else find anxiety a problem with peginterferon,or is it just all the worrying health care problems on the news all the time?

[EPguy in reply to caroline_284]

I think the IFN might exaggerate any stress effects, I feel like that. For sure any stress makes the BP go up a lot.

[caroline_284 in reply to EPguy]

Any suggestions to help with that.

[EPguy in reply to caroline_284]

We often read that we should address the source of the stress. Not a real helpful answer since it is rarely that easy. But in the cases where it's actually possible to fix the stressor that does help.

On the IFN side, for all its side effects I favor the current advice of the Silver Cornell MPN group to use the minimum effective dose. But our Drs don't always agree with that.

[caroline_284 in reply to EPguy]

Thank you for that. I would agree with you on that.which is why I am reluctant for them to up my dose.but I won't have an another appointment for 6 weeks.so I will have to just wait.

[EPguy in reply to caroline_284]

If your bloods are ok as can be, you have a good case to hold tight.

[caroline_284 in reply to EPguy]

Yes thank you. That's what I'm hoping.