switch from peg interferon to Jakavi due to shortage, anyone doing the same?

[Deevie1]

Hello friends,

I’ve PV jak 2 for 4 years now. Been on peg interferon 45mg weekly for the last year. My bloods have been good(platelets down to 350 from 1100) but my thyroid playing up and I’m on eltroxin for that 100mg a day.

I just had a call with my haematologist and MPN specialist in Dublin and she said she will probably have to move to me to Jakavi due to the interferon shortage. She said Jakavi should help with my thyroid issues anyway? I’m wondering why I wasn’t put on that in the first place when thyroid issues started.

Anyway, has anyone experience of Jakavi of switching to it from peg interferon?

Any advice/experience greatly appreciated

Thankyou 😊

[EPguy]

I did the switch after autoimmune troubles. Jakafi (rux) should calm down your thyroid esp if it's of the immune sort. Autoimmune is among the top rare risks of IFN, while thyroid can be among the less severe A-I manifestations.

I've found Rux to be boring med in the good way. my mutation continued down on it as of jan 2024.

Your blood counts may hold for a while after quitting the IFN, if so your Dr may not start Rux right away

Weight gain is common. I'had increased hair growth on Rux. I do miss the infrequent dosing of IFN. Be sure to inquire about the shingles vax before starting Rux.

[Deevie1 in reply to EPguy]

thankyou for your reply EPguy. I’m thinking of asking my haematologist if I can take afew months break before starting jakavi and see if thyroid settles first.

Best wishes to you

[Jamesxyz in reply to EPguy]

Just curious.

Can youu detail the mutation decrease on rux?

Thanks

[EPguy in reply to Jamesxyz]

It's for Jak2, my only mutation found in tests. This is a plot of VAF vs time. It shows progress on IFN and later Rux. The Rux trend will be more certain if it continues in a future test. As discussed in posts last year or so, Rux has been confirmed to have good reducing ability for many.

VAF

[ainslie in reply to Jamesxyz]

I have just done Mutation panel test, my Jak 2 % came down from a year ago at 21.6 to 14.3 in one year, I am on 20+20 mg Rux for PV

[Jamesxyz in reply to ainslie]

Wow,

How long on rux just 1 year?

Thanks

[ainslie in reply to Jamesxyz]

I started low dose in 2017 but I couldn’t get a Jak2 % test then, I slowly increased dose of Rux from 2.5mg BID to 20mg BID (long story). My first quantitive Jak 2 test was last Sept, the panel also showed no other mutations.

[Dusty777 in reply to EPguy]

EPGuy, please explain about the shingles vaccine. I'm hoping to get switched from Pegasys to Rux due to thyroid issues. What's the deal with the vaccine? Thanks

[EPguy in reply to Dusty777]

The current vax, Shingrix, is recommended for all over age 50. Rux increases the risk of shingles so it's a double recommendation. It's a 2 dose series spaced 2-6 months apart. It tends to have more side effects than other vaxes, pain, malaise etc so they usually suggest getting when nothing important is planned next few days. I happened to get it while on HU and it was a typical experience for me.

There is an older live version that is no longer offered in most countries.