Change from Hydroxy to Interferon

[Belgobrit72]

Good morning, would love to hear looking from patients who have moved from Hydroxy to Interferon. I am 48 and been on hydroxy for 4 years but my consultant is now suggesting moving over to interferon. I am a bit reluctant to change my treatment and deal with potential new side effects and learn to self inject at the moment. I am still waiting for my covid jab and working. Thank you

[wiskie]

Hi, I went from 10 years of high dose Hydroxy ( which stopped working) to Peg-Interferon. I was very worried about the change, but now platelets are more stable, I am relieved. I don't like injecting myself, but you do get used to it after a while, worst side effects are flu like symptoms & I quite often get fatigue, which is very common with ET. Good luck.

[Belgobrit72 in reply to wiskie]

Thank you. That’s really useful Consultant mentioned the same side effects. I have asked to wait a bit longer as thought of getting flu like symptoms at the moment would no doubt turn into a covid positive worry.

[wiskie in reply to Belgobrit72]

Hi again, I find the flu- like side effect appears 1-2 days after injection, its short lived, normally lasting 24 hours. I always take paracetamol before injecting. Peg/Interferon does also affect my mood & makes me very low, but it's working for me, so I tolerate it all. Take care.

[Belgobrit72 in reply to wiskie]

I think I need a bit of sunshine and the evasive prospect of seeing family and friends before I can cope with the thought of having my moods affected even more than just the ongoing feeling of having enough. Hopefully by the time my next appointment comes along we will start to see the end of the tunnel

[Jonnymitts in reply to Belgobrit72]

Hi Belgobrit, I was supposed to start interferon treatment last year but they keep putting it off as they say the side effects could be confused with covid. Hopefully I will get vaccinated before I do start treatment, as initially I will need to have more regular blood tests, so more trips to hospital.

[JojoWonder]

Hello, when I was diagnosed (ET Calr) I was put on Pegasys but then Hydroxy was added in as my platelets were stubbornly high, it did the trick but I felt awful. After about 6 months I was taken off Hydroxy and have been taking Pegasys alone for over a year. My count is nicely in the 200’s. I don’t find the injections difficult although my tummy is quite tender always because of the regular injections. The other side effect for me is my moods. Around once a week I can get snappy and short of patience. Unfortunately it’s not consistent so it could be any day of the week. My Husband says he can tell when ‘it’s my interferon day’ It’s a common side effect but a small price to pay for it’s great results and it’s much better for you than Hydroxy. It’s most MPN Specialists drug of choice especially for young people because it’s not ideal to be on a chemo drug like Hydroxy long term. Hope this helps. Feel free to reach out if you’d like to chat more 😊

[Belgobrit72 in reply to JojoWonder]

Thank you, that’s really useful. I have been working all through the pandemic and it is now wearing me down. I think I need to wait till weather is better and things are starting to look up a bit before I can cope with changing my treatment and dealing with new side effects. Have asked for a face to face rather than phone appointment next time to talk it through. Hopefully by then the sun will be out, I will have had my jab and might j’le en be able to think about booking a week off work.

[gset]

Hello, when I moved I asked if I could inject my thigh instead of tummy, having a sensitive stomach area and they said yes. I was also advised to take paracetamol before injecting to help with flu like symptoms. Hope it goes well fo you.

[Belgobrit72 in reply to gset]

Thank you.

[Indigo42916]

I have ET and have been on Pegasys (interferon) for 20 months and I am doing great! I have no side effects other than redness at the injection site. My platelets are stable in low 200's, wbc's tend to be low, so I get labs every 2 months, and follow-up appointments every 6 months. I went from once a week injections to every 2 weeks now.

It is my understanding the side effects can be dose dependant, and generally you are started on a lower dose, than prescribed for other diseases.

Take good care.

[Belgobrit72 in reply to Indigo42916]

Thank you.

[CAOR]

I started off on Hydroxy, but my doc switched me over to Pegasys 4 months ago and my platelet which used to be 1.4 is now in the 400's. Quite the miracle! I like it better than Hydroxy and only deal with a few side effects that have been mentioned already. Redness and pain at injection site that lasts for a few hours, flu like systems within 24 hours of injection lasting for maybe 1/2 a day and occasional mood swings. My husband does the injection luckily as I am deathly afraid of needles so couldn't do it myself. I would definitely wait until you're ready for the change, but it has been a miracle for me so far. Hope that helps and good luck to you!

[Belgobrit72 in reply to CAOR]

Thank you. My platelets are around 450 ( down from 900 at highest point) but haematocrit always a bit up& down. On the plus side my vaccine appointment has just come through

[Joetcalr]

Hi, I've been switching over since Oct, was great at first, but now the side effects are building up, I'm wondering whether half peg and half hydroxy would work best for me.

[Belgobrit72 in reply to Joetcalr]

I wondered if that was an option. Will ask the consultant when I next see him. I don’t mind hydroxy but have to listen to the professionals. What amazes me is that we are meant to be a rare group but there are obviously a lot of us

[Joetcalr]

That would be great if you asked that, I'll ask mine too. Thanks Jo

[Lasbrisas1]

Many many many are dying from those COVID JABS, just be so careful.