Interferon alpha

[Melaniem59]

Hi I'm ET & jak2 positive, just on aspirin but due to start on interferon alpha injections, anyone had experience with this, good or bad?

Thank you

Melanie

[rebeccalub]

I was on Pegasys for 2-3 years, loved it. Little to no side effects, had to stop for a rare side effect that you should be aware of ........chronic obstructive pneunomia

[AndyT]

Hi Melanie- I've been on Pegasys just over a year and am very happy with it. Counts down from 1100+ and now stable in the 300s with just 90mcg every 4 weeks. Hardly any side effects - just a bit of dry skin and a few mouth ulcers but both easily treated. Hope it works as well for you. Andy

[Melaniem59]

Thank you.

[socrates_8]

Hey Melanie...

Is it Pegasys OR Interferon?

Pegasys is often just one shot a week whereas, Interferon (Roferon), might be every two (2) days such as I am currently receiving.

I am Post ET/ Myelofibrosis, and actually I am just waiting to find out if I can go onto Ruxolitinib (Jakaffi)... Hopefully, I shall learn of that outcome this week.

I have been on Interferon injections every 2 days for just over 3 months or so...

There are some symptoms/side effects depending on the individual's concerned, as I believe it can vary a little from person to person.

My biggest concerns are the sweats, bone/joint pain, pruritus (itching), some mental confusion (from time to time), mouth ulcers (from time to time), nausea, fatigue, sleep deprivation... and an increasing shortness of breath to name the main culprits...

However, on the brighter side, I personally find it much more tolerable than Hydroxyurea (HU).

... And on some rare days I almost feel completely normal... (almost)

Hope this helps a tad...

Steve (Sydney)

[Melaniem59 in reply to socrates_8]

It's interferon, 3-5 times a week, thanks for your info, hope you get on the ruxolitinib & it goes well

[magirose]

Used it very successfully for a long time for Behcet's disease. Just stopped because I may have had a late reaction to it. Hair loss and few other symptoms but don't even know if it is related. Easy to use and little side effects for me. Good luck.

[Bothwell]

Hi Melanie I have been on pegasys interferon just over a year for PV jak 2+ One 90mcg per week.

Main thing it is controlling by bloods levels side effects can be rubbish constipation to itching sore neck muscle ache. However it gets easier and at least I have the consolation that bloods are consistently in norm range. Hope this helps and good luck with your treatment

[eastwood1932]

Hi Melanie. A

I am ET but jak2 negative. I went on interferon (3miu 3 times a week) after coming off HU. I did find it difficult at first but after 3/4 months things improved. It worked very well for a while getting my counts right down and a lot of people seem to get use from this drug for many years. Not controlling platelets so well anymore for me but we all have different bodies and some of us have other complications which I am sure effect how a drug performs. Anyway, good luck with it, if it is a bit tough to start this should improve as yr body gets accustomed to it.

Janet

[wormwood]

Hi love.. im on interferon 3 times a week injections into stomach. it works. some side effects but not many. i too have behcets disease...

Dont worry.....

[Mazcd Partner MPNVoice]

Hi Melanie, you might find this video is helpful mpnvoice.org.uk/about-us/vi..., Alisia is on Interferon and in the video she talks about how she injects herself and gives a demonstration. Maz

[Melaniem59]

Thanks everyone for your replies, really really helpful

Thanks maz & Alicia for doing the video, fantastic & not as bad as I imagined!

[harleydavidson]

Hi Melanie

I have been on Intron A interferon injections for 2 years and have never had any serious side effects. I started on 3 a week but i only need 1 injection every 2 weeks now as it works well for me. I hope it's just as good for you. Mel x

[Brook04]

My partner started on roferon inteferon alfa Monday night ,he had the next day off work due to being up most of night with flu like symptoms but was then ok the following evening. It's his second injection tonight so hoping it's going to go a bit better. He has them Monday Wednesday and a Friday 3 times a week.hes on the low dose 3miu .

[Melaniem59 in reply to Brook04]

How's your partner getting on with the interferon?

Hope all well

Melanie

[Brook04 in reply to Melaniem59]

Really well,the first injection was the worst one. X

[Melaniem59]

Fantastic, that's brilliant news, I feel better about going on it 😊