Question for those taking PEG Interferon

[Tylerdog1]

I started on PEG Interferon at start of the year injecting 135mcg (it’s been slow at reducing levels) to treat my JAK2 PV.

Have noticed that recently, I have been having some “fuzzy” (don’t know how best to term it) moments, where I could be in mid conversation and then I cannot tell what the other person is saying to me (it’s like they are just going blah, blah). Also noticed it watching TV/listening to radio. Lasts seconds/a minute and then all is normal again.

Wonder If anyone else experiences this ?. Don’t know if it’s a side effect of the treatment or a symptom of the PV itself.

Thanks Ian

[Otterfield]

I was on Pegasys for just over a year and I started to find it hard to remember words and names. I'm now on Ruxolitinib and have the same problem so it might just be the "brain fog" common to many conditions. It's horrible isn't it? And can be embarrassing.

[Bigcheat]

Hi Tylerdog1,

I know the feeling. You are in a conversation, and suddenly have no clue what the other person is trying to say to you. Used have that a lot, before I started Aspirin for my Jak2ET. I suppose that is what many people refer to as brain fog, and can be just a symptom of the disease itself.

Cheers,

Bigcheat

[Paul123456]

I found 45 mcg Pegasys quickly reduced my WBC and Platelets but RBC took over a year and 135 mcg.

Have you been checked for LDH, latest % JAK2 and CALR mutation? You say started as ET and now PV?

I was dx with ET and PV/MPN-U from different clinics with same BMB.

Pegasys has worked almost too well for me. Bloods, apart from HB, are now too low despite reducing dosage to 25 mcg every fortnight. LDH has dropped from 230 to 105, JAK2 from c. 80% to 14%.

I also have TET2 mutation which is meant to reduce Peg efficacy by increasing inflammation.

It’s possible I have more than countered this with plenty of exercise and anti inflammatory diet - ie no sugar, refined, processed foods etc

[Tylerdog1]

Thanks - yes it’s the red blood counts that are not coming down - still around 50.

I was diagnosed back in 2007 and it’s slowly progressed since. Last years bone marrow biopsy showed I have grade 2 Fibrosis and raised LDH (310), which was the cause for then starting Interferon (had only taken Aspirin previously).

Since starting on the Interferon, I have recently experienced having these “brain fog” moments.

Therefore wondering if it’s due to the Interferon or just a symptom of my condition

[EleanorPV in reply to Tylerdog1]

My RBC took over a year to react, I never went above 90mcg. I remained having a venesection when my HCT went over 45. I have been taking pegasys for 4 years. I still have times - similar to yours. I feel my brain sometimes can't cope with the thought process for communication . I'm only on a maintenance dose. I think my symptoms are related to PV. Have you spoken to your specialist nurse/doctor about this symptom?

[Threelions]

Yes, I experience, like others “brain fog” . Currently on Interferon (which seems to work well with me).

Thankfully the fog, much like The tinnitus is only brief and ,at present, manageable.

[samiris]

what the hematology doctor says? While it is useful people share and discuss the issues here, but it is the professional duty of the doctor who prescribed pegasys or any other medicine to clarify questions. seems somehow they are careless.

[Tylerdog1 in reply to samiris]

Thanks - it’s only started recently, but will be something I speak to my Haematologist about, when I have my next appointment next month