Break from Pegasys Interferon

[Looolooo]

Following a diagnosis of mild Sjorens my consultant is recommending another jak2 allele burden test ( yes in uk you can now ask for another one rather than be left guessing) and a potential break from Peg. My concern is that if heamocrit numbers start rising again, it takes so long for Peg to 'work' and I'll be back to venesections (and accompanying tiredness, restless legs etc etc.). Anybody Bern advised similar?

[EPguy]

You know my story, we've had replies together. Your Dr is doing the right thing, you extra really want to keep that Sio mild and have a nice life.

You posted on "Dry eyes, dry mouth, joint pains and an annoying dry cough. " Are these Sjo Sx all still mild?

For me Dr. Gotlib said never again any IFN-a.

Has your Dr discussed Rux? I switched to Rux and at least the MPN is doing well. Good idea Dr wants another allele (VAF) reading. Do you have prior VAF results before and after IFN? Rux is now also known to reduce VAF for many pts, It has been doing so for me and others here.

[Looolooo in reply to EPguy]

Thank you for your reply EP guy. Extra water intake has helped dry eyes and mouth. Hrt has really helped with joint pains and a change in blood pressure med has stopped my 'ramapril' cough. Doctor hasn't discussed a change in meds, just a break so I will be sure to discuss this with her next time. Yes I was at 14% on diagnosis so it will be interesting to see effect of peg. Have your symptoms improved?

[EPguy in reply to Looolooo]

Your VAF at Dx was the exact same as mine. (blood draw reading) I've posted a plot of my decline through IFN and then Rux. Thru 11 months on Bes it was 14 down to 8, currently 3 after ~18 months on Rux. You've been on PEG a few years is that right? Agree knowing your current AB will be interesting. As for you my autoimmune trouble had no connection to the IFN working well on the MPN.

Good that you can actually do something for your Sjo. I agree it's mild. It's normally irreversible but many patients remain mild and enjoy normal life. Yours seems like that.

On the water, take care that you don't wash away all the saliva, best to keep what's there as much as possible. Seems you're ok there.

This is why your Dr is being cautious, from the PEG label:

"May cause or aggravate fatal or life-threatening neuropsychiatric, autoimmune, ischemic, and infectious disorders. Monitor closely and withdraw therapy with persistently severe or worsening signs or symptoms of the above disorders"

It's the "aggravate" part Dr is looking at.

My MPN Sx aren't really any, it was always mild. Thanks for asking. But the Sjo varies from uncomfortably functional to gone-to-bed. I will post soon on my thoughts at my 2nd anniversary of the last dose. General thought is my experience is one-of-a-kind with no similar case histories I'm aware of. I'm trying to get in the numerous trials but one or both of the MPN and Rux are exclusionary.

[mother2britton]

I took a Peg “vacation “ for two maybe three months due to elevated LFT’s. My platelets were very stubborn taking almost a year to see any decrease in platelets then returned to untreated levels relatively quickly when Peg was stopped. Oddly enough when I restarted at the same 45mcg bi-weekly dose they responded very quickly, maybe 3 weeks and they were back to levels prior to “vacation “

[Looolooo in reply to mother2britton]

That's really interesting that, on returning to peg, your numbers responded more quickly than expected. Quite reassuring. Thank you.