Experiences with

Interferon

Hi I've had ET for 7 years now and have been put on pegulated interferon after other treatments failed to control my platelet levels.

Cutting edge therapy for PV - MF patients who do not respond to Jakafi or Pegasys alone - http://bit.ly/2tBjHVs

However, my 2 little girls are very challenging, (1 awaiting diagnosis of ADHD and their other Asperger's syndrome) I'm on interferon and find that I am sooo tired all the time!

Thankfully HCV treatment (interferon and ribavirin) although seriously tough to go through was successful. For this I feel very blessed. Now I am going through the menopause which I am finding the most difficult of all. I am on HRT Tiblone 25mg as I could not tolerate the chills I was suffering.

Been hypo 11 years since interferon treatment and wondering if anyone else is in the same situation?What treatment / management have you found useful. Do you still have symptoms or other health issues?

When I attended at the end of March she said she hadn't applied for the interferon as the weekly venesections and anagrelide are slowing getting things under control.

Hi only just found this forum, I have had et for 16 years was fine for the first ten on hydrea and aspirin but then blood changed and got quite anaemic, doc put me on anagrelide then interferon, these treatments did not agree with me at all and now I am back on hydrea and still not right.

I was told that it was nothing to worry about, but in the next breath, I was told that if they go over 1000, then because of my age (45),I would probably be put on interferon. I've done some reading and can't say that I like the sound of the side effects much.

My heamotologist doesn't seem to think it's abnormal and I did mention a change of medication but she said interferon has side effects and she isn't keen on it and I know I can't have anagrelide due to a heart defect .

turns up some possible links to aspirin, which I've been on for 14 years, but probably not linked in low doses and also to interferon, which I've been on for 18 months, but not as a common side effect. Has anyone else on here with ET experienced problems with tinnitus and identified a cause?

Her doctor prescribed her pegylated interferon and her blood levels rapidly dropped in the space of a six months to what is classed as 'normal'. Once she reached this stage her doctor stopped her medication and her blood levels have not really changed since coming off the medication.

I just wonder if anyone has any information regarding whether interferon is contraindicated for people who have had a previous thrombolytic event and why . Also if anyone with a history of thrombolytic events is on pegasys interferon . I'm a proper awkward child !

Interferon a month ago. No side effects. Last week they upped my dosage to 180mcg/weekly. Initially I was fine, but in the middle of the night I woke with excruciating leg pain/bone pain - like constant cramps in both legs. It lasted all night. This has gone on for 3 days now.

Could anyone advise me about pains with Interferon. My husband has been on it for 3 months, my observations are that it's pretty horrendous. He is experiencing many issues, fatigue,depression, painful joints and muscles. He is considering stopping treat mentioned as feel he cannot cope.

Sorry for the long post but feeling frustrated atm...on neo merc 30mgs whilst toxic tho now reduced to 20mgs until i see her again...have progressive ms and recently found out the interferon injections i was on for many years prob destroyed thyroid...am waiting on ultrasound of thyroid as i seem to have

I thought I would be able to carry on as normal after my diagnosis of ET last year, I'm injecting x3 a week Interferon Roferon A, I am so tired. It is so nice to read I'm not alone, i was hoping the treatment might make me feel better not worse. I am now contemplating if it's worth taking.

I have been taking hydroxycarbamide since & have had 3 years taking interferon (I had 2 babies) . My question is regarding prescription charges in England......

There are several concerns, one being wether to do interferon instead but my research looks like it can not be a great time. Also any future pregnancy looks problematic.

For me , because of a history of melanoma my haematologist has said hydroxyurea is contraindicated as is interferon as I had an unprovoked PE last year ( she thinks the PE was probs due to undiagnosed PV which was diagnosed as many are, following a routine blood test) .

1,625 #patients were treated with interferon and ribavirin between 2000 and 2008, and were followed up through May 2014 to study the effects of non–#liver-related and non–#AIDS-related events among patients with #HCV/ #HIV coinfection.