Peg Update - Good News

[Solyesh]

Had CBC this morning and just got the partial results (all but the thyroid tests) - very happy! For the first time in over 10 years (with one exception when I was taking the highest dose of hydra I wound up not tolerating) my platelets are WNL!! At 447 they are right under the 450 cutoff (my personal target was sub 600 anyway) - amazing!

All the bloods WNL - my ALT remains just above high end normal but all other liver functions WNL so fine there. Only reading of interest is my uric acid is right above high normal for only the second time in 10 years but wonder if that has as much to do with hydration as anything else.

Very happy to see the hematological response to the Peg - both on platelets and WBC. Hope it translates into a reduced allele burden as well. See my MPN specialist on Sunday and imagine he will want to keep things steady for now. Will report back.

[Hopetohelp]

👏🥂🎈well done you!

[hunter5582]

That is very good news! Glad to hear you are responding well.

You are correct that it is not uncommon for LFTs to be elevated on IFNs. It is not something to be concerned about, just something to watch. You are also correct that elevation in kidney function numbers are sensitive to hydration. While it is important for everyone to stay hydrated, as we age our kidneys get weaker. It is especially important to stay well hydrated when you have a MPN and even more important when taking the drugs used to treat MPNs.

Do please let us know how the appointment goes.

[mhos61]

Delighted for you; I sense your joy!

[lizzziep]

That’s great! I’ve just had my second peg injection. How long have you been on it?

[Solyesh in reply to lizzziep]

I first went on Peg, after not tolerating HU, in October of 2021 - started at 180 mcg every 2 weeks - was doing fine until a CMP reading in Jan 2022 that showed very elevated AST and AGT readings (liver was not liking Peg at 180mcg). Wanting to try and stay on Peg, my MPN specialist agreed to stop the Peg for 3 months to see if my liver bounced back. It did and we restarted Peg at half the initial dose (90mcg every 2 weeks) in April 2022. The liver readings were still not where we wanted them, so we dialed back on time interval to 90mcg every 3 weeks. That was about a year ago (August 2022). Held at that dosage for 5 months - until the beginning of this year. Platelets were slowly coming down but still high. Went back to every 2 weeks and have held at that dosage until today..so fits and starts but both I and my MPN specialist knew when we started the interferon journey that it could be a very long process and we might have to play with the dosage until we got the balance right. A long way to say basically have been at this level for about a year.

[AndyT]

Great news - glad it’s working well for you. I’ve been on Peg for 8 years now and am very happy with it!

[ainslie]

Congratulations, my understanding on Uric acid is it can jump around a bit and my local Haem nurse said they are not concerned because the other kidney indicators were fine, at least that’s my interpretation of what she said, best ask your Haem though

[KLCTJC]

Great news!!!! As for the uric acid, probably nothing to worry about if your doctor isn’t concerned. Of course you could always change your diet a little if concerned. Cut out some good stuff like red meat, beer. Low purine diets can lower it, but it sounds like all is good!!! I hope you celebrate your good news😊

[Minify]

Wonderful news! Your positive attitude is great, too!

[azaelea]

Great news! Well done!!!

[Wyebird]

Fab news

[Lillysue19850705]

Great new!! May I ask what dose of Peg are you on currently?

[Solyesh in reply to Lillysue19850705]

Currently on 90mcg every 2 weeks - with the exception of day 2 fatigue - no noticeable side effects - will see what my MPN specialist says but we had discussed as part of our treatment plan if platelets got to (or below) normal limits and remain there we might try to reduce the dosage from 90mcg to 67.5 mcg every 2 weeks to see what happens..but can't imagine we will do that until we have at least 2 more readings WNL and after the planned BMB (Jan 2024) to see if there has been any effect on allele burden and bone marrow.

[Lillysue19850705 in reply to Solyesh]

Good luck and best wishes!

[Exeter21 in reply to Solyesh]

Have you tried injecting morning instead of night. I decided to experiment & mornings were a game changer. No symptoms whatsoever compared to night time I used to feel rough for 24 hrs . All that went with morning injections as body movements & fluids seem to process through quicker than asleep in bed overnight 👍 Julia .

[Solyesh in reply to Exeter21]

Yes - I have tried various times during the day but more or less same result - if I am to feel anything (and it is not after every dose) it usually is extreme fatigue day 2...but it might also be connected to travel (I travel internationally for wok a lot)....

[joyfuljoyful123]

So happy for you! This titration to find the right dose of Peg requires patience! I reduced my dosage from 180 to 135 per week and then tried stretching it from weekly to fortnightly. Haha. Unfortunately I did my CBC yesterday and the hematocrit went up from 41.9 to 46%.

Seeing my doc soon. Guess my hope of reducing it to 90mcg is sometime away.

Take care!

[Solyesh in reply to joyfuljoyful123]

It is definitely a process! Good luck!

[Exeter21]

Peg working good for me also . Started it September 22 after rejecting Hu side effects I had been taking .

Weekly 45 on Peg was too much for me so 3 months off everything. Started 45 monthly. Platelets have reduced slowly to current readings on 1 Aug to 370 . V happy at that .

All other readings normal . Very pleased with Peg & get phone consultation from Professor Harrison every few months . Feel this is a step forward from HU for me .

Hopefully Drs will stop being dismissive about Interferons in future , but mostly because Hydroxy is cheaper . Julia . UK .

[Solyesh in reply to Exeter21]

Sounds like Peg is working great for you! Cost is definitely a consideration in some instances - also my MPN specialist says many doctors still have the negative association, either from personal experience or being taught, with the interferon before the pegylated versions (which were much more difficult for most to tolerate). Also, still considered second line or "off-script" for ET (not specifically approved for ET treatment in many countries)..the good news is that additional research, information/data and options are being developed so we have choice to use what is best for us....