Interferon

[Carol0925]

ET / JAK2pos diagnosed September 2023 age 66yrs.

I’m collecting my Interferon therapy today after seeing my Specialist in Oxford (UK) yesterday. Recent platelet count is 506 and my BMB is showing no fibrosis.

I’m feeling a little apprehensive but hopefully won’t have too many side effects. I also have to take Allopurinol for the first month. Blood tests every two weeks and back for FU in three months providing all is well.

[Spanelmad]

Have responded to your post under Thank You.

[Mishie14]

I was in same place as you 18 months ago other than much higher platelets found in routine blood test. Then I was advised to take hydroxyurea which lowered platelets but ruined quality of life. Then prescribed anagrelide with same results just different bad side effects. After 3 months recovery from those drugs I was put on 45 peginterferon first bi-weekly then weekly. Completely different treatment which is working slowly but safely. Initially I had intermittent nausea on day 2 or 3 but was given anti nausea pills that worked very well. Also took injection at 3:00 PM so had less time for a bad day if it was to be. Didn’t happen. I continue on the slow and steady path with 68 peginterferon with no regrets. It’s working. I wish the same positive peginterferon experience for you. Stay safe!

[Carol0925 in reply to Mishie14]

Thank you for your reassuring words and pleased you’re now having a positive experience. I plan to start today. Best wishes!

[Ginevra]

Hello, Lavazza. I'm also in Oxford, with recently-diagnosed ET. I have a higher platelet count than you, and a small amount of fibrosis. I'm on daily aspirin and have started Pegasys interferon, the same dosage as you. I was pretty anxious about injecting myself and what the side effects would be like, but I've now administered four injections and it's been fine. I have a headache for a couple of days after injecting, and feel tired and rather depressed on the second day, but the rest of the week is OK.

I had a telephone call with the haematology department after three weeks, when I was told that my platelets were already down from 830 to 640, which seems a very encouraging start.

I had read that it was good to adminster the injection just before going to bed, but my consultant advised taking it in the morning. I assume this is so that I can drink lots of water for the rest of the day, which should help mitigate the headaches.

I hope you react well to the injections. Best of luck!

[Carol0925 in reply to Ginevra]

Hi and thanks for your reassuring message. That’s a good point about taking it in the morning to have more fluids etc. I did my injection this morning and have been drinking well. I need to be very disciplined with water too. That’s good news your platelets have come down too, I had a BMB in October which didn’t show any fibrosis. Are you JAK2 pos? I am. Good luck to you too. We’ve got this 🙌

[Spanelmad]

How are you today, day 2? Can report report that the itching has gone!!!!! I'm day 4 no more antihistamine yipeee

[Carol0925 in reply to Spanelmad]

All good here 👏🙌

[Spanelmad]

👍 news

[Ginevra]

I hope you're still feeling well after your first interferon injection?

I have the JAK2V mutation and a mutation in the U2 AF1 gene, whatever that may be, which increases my risk of stroke.

I'm on injection number 5 later today and they seem so far to affect me a bit less each time. I'm not thrilled about having to do one on Christmas Day, though! I've also finished my Alopurinol. Off now for my two-weekly blood test. I'd be interested to hear how you get on with your first blood results after starting treatment.

[Carol0925 in reply to Ginevra]

Good Morning, all well here. I’ll be interested to hear about your results too. I haven’t come across U2AF1, but to be perfectly honest there’s so much I don’t know. Good luck for a positive blood result 🤞