Is there anyone else being treated with Interferon, especially Pegasus?

[Beartime]

How long has it taken for you to settle on the treatment?

[AliCaldwell]

Hi I am on Peg Interferon. I moved on to it from interferon and was lucky to suffer no real side effects. I think the key is to find when to inject (time) with interferon. They do recommend evening but I found if I did this I didnt sleep well. So for me morning is best as I work through any side effect I have!

[ETphonehome]

I was on Pegasys from June 2008 till 2011. It was extremely effective with only minimal side effects and certainly far easier to tolerate than regular Interferon.

I have been in molecular remission since I stopped in 2011 so haven't taken anything for my ET for over a year. How long this will last, no-one knows but I am enjoying being MPN meds free.

I still have regular blood counts at my local GP (once a month) and see my haematologist 3 or 4 times a year.

[Rachamim]

Hi

I was diagnosed with PV in 1989. Your situation with ET may be slightly different but basically the same. The first year I was put on Hydroxyurea but it didn't help. In 1990, I was put on Interferon Alfa and have been on it ever since. I inject three times per week at present but over the years, this has varied a little according to whether my HCT had gone up or down. The dose is 3 million units.

As regards side effects, in the earlier years, it did make me feel 'fluey' and to overcome that I took a couple of Paracetamol (Tylenol in US) at the time of the injection which is just before I go to bed. After 22 years of doing this, I think my body has grown used to the INF and occasionally I forget to take the analgesic but don't have much in the way of adverse side effects. One side effect which I am told is partly due to the PV and partly due to the INF is that I have grown quite weak and lacking in energy which is frustrating for me because I was always very active.

Hope this helps!

John

[tombs]

I was diagnosed with PMF in 2009 and on 3 injections per week of ALPHA INTERFERON. I was lucky to suffer the famous side effects only on my first injection!

I was told to stop the injections for 2 weeks to improve the white platelet count and reduce fatigue.

I restarted last night and suffered the side effects - wasn't expecting that, but feel sure it will settle down.

Other than fatigue and white hand syndrome, I am lucky to be reasonably stable.

[Beartime in reply to tombs]

Many thanks for your reply. I was on interferon for approx 7 months (at 6 months the side effects stopped & I suddenly felt human again) I then switched to Pegasys for 3 months & like you had to stop treatment due to a low white cell count. For the last 3 months off treatment I have felt great, but 2 weeks ago started treatment again due to the platelets increasing. I have been feeling lousy since & hoping it won't be 6months again before I feel better. I was hoping that once the right dose age was found for me I would remain on the treatment. Reading some people's experiences it appears that they are on & off treatment. This doesn't reassure me, especially when commencing treatment I feel so out of it.

Could you tell me more about your white hand syndrome. The consultant is currently investigating why once a day my fingers &occasionally my toes are going white & feeling numb. This only started about 4weeks ago & has been worrying me.

Many thanks I look forward to hearing from you again.

[tombs]

White hand syndrome is probably not the correct medical term! I struggle to walk any distance uphill and this results in breathlessness and white fingers. It appears worse in cold weather. Am told that this is due to the blood concentrating on the internal organs at the expense of the extremities. Good luck with your treatment. Which MPD do you have?

[Beartime]

Thanks! I have been diagnosed with ET. 12mths ago the JAK2 came back as negative, for some reason the consultant has just sent this away again for checking - not that this will affect anything ie treatment. I am still a bit of a novice when it comes to MPD & trying to understand it & learn to live with it like so many others.