Experiences with

Interferon

But she mentioned about changing from HU to Interferon. Which is better for my age, but did explain side effects can include mood swings. Possible suicidal thoughts. Has anyone suffered this at all? I'm Male and 46 years young. Thanks Smudger

Morning everyone , I wondered if anyone has experienced a slow journey in platelet reduction on peg interferon alpha like me….. I’m 56, fit and healthy with an active lifestyle. I have ET triple negative and take aspirin daily, diagnosed in April 2020.

I am a very active person, but with interferon, I feel like a zombie. I find that I don't have much energy and get completely out of breath just walking up the stairs or bending down to pick something up. Walking through a grocery story is now a huge challenge for me.

Just wanted to ask people who are on Interferon, have they noticed a vast change in their eyesight or is it just from the Essential Thrombocythemia itself… I know when you usually ask the Haemo docs they don’t know or are not aware of it TIA

My bloods have been good for some time, but, they reduced my interferon to 90 and the HCT went up over the target 0.45, for three quarters, not by much, 0.47, 0.46, 0.47. Today they are still at 0.47, so I am having to go for a venesection, 1st in nearly 3 years.

Hi, I am ET triple negative 7+ years, have recently changed from Hydroxy to Interferon 90mcg every two weeks, I have just had my results back from a cervical screen test and have tested positive for HPV but there are no abnormal cells so currently low risk for cervical cancer.

There were some posts a few weeks ago on adverse immune responses after vaccination for people using interferons. I had this experience while transitioning form HU to Peg, firstly with a covid jab last December and secondly with the first of the Shingrix jabs in March, which triggered, at the very least

My op went ahead with minor problems only, whilst I continued on my interferon...and 4 weeks later I'm beginning to further recover , and already feel so much better than I did pre op x Rachel x

I have started on peg interferon, I had my 4th injection yesterday, I’m on 45 mcg at the moment, I was very wary about the drug however I have been mostly ok. I’m going to the toilet more often 💩 and the first week I was quite nauseous but that has settled down.

There is an option to go onto interferon or possibly the Mithridate trial, should I change?

This past week, I received the results of a bone marrow biopsy after being on Besremi for 12 months to treat PV (diagnosed 16 years prior to interferon treatment).

Interferon. Well, for the past few months, I’ve not experienced any joint pains whatsoever. Is this just coincidental or would that be the effect of interferon? Views welcome!

I'm considering asking my specialist for an alternative drug...maybe peg interferon (tummy injection ). Should I go down this path or live with the ugly bloat?

Interferon beta 1b and I have the scarring to prove it. The wife likes to tease me about all the lumps in my butt. No soft fat for her to pinch. Ahh well this is life with a chronic incurable disease. I HOPE YOU CAUGHT THAT.There is no cure for this, no matter what somenody says.

I have been put on the Interferon treatment at 90 micrograms. I am 40 years old. I started the treatment this Monday and didn't feel too bad with the symptoms. I just seem to be experiencing a weird heavy / achy feeling to my right leg - which subsides after some nurofen/paracetamol.

Therefore, I was put onto Interferon. Though it worked, I found dealing with health insurance and taking the vaccines onto planes quite difficult since I am a frequent traveler.

Curious to see if anyone else has lost weight while on Peg interferon? I’ve suddenly started to lose weight in the last month. Probably 6 lbs without trying. I’ve been on Peg for 10 months with no side effects at all.

I saw that interferon can make people itch & don’t want to start itching like crazy. Thanks.

Hi my name is Denise I have been asked by Haematology consultant to consider starting on Interferon but I am worried about side effects. Particularly hair loss.

They were considering interferon but was worried about side effect. One of the haematologists decided to try combining both drugs. I have only been on this. Ruxolitinib 10mgs twice a day and hydroxycarbamide 500mhs every second day.