Has anyone experienced a remission in ET with interferon and how long did it last?

[tarifa]

[Marie95]

Hi Tarifa, I cannot answer your question as just recently started IF on a low dose after takin HU for a few years, bur know someone who is ET JAK neg who took IF for nine years (she ssays it was a very difficult experience at times) but didn't need any meds for two & half years after the nine year period. Since the break she is now on HU and it isn't controlling her counts but her Doc has said she cannot put her back on IF,as it won't work now - I will ask her why that is when I catch up with her and post, how long have you been taking it now? hope this is of some help.

[tarifa in reply to Marie95]

Strange that she cannot go back onto interferon. I have been told if and when my counts reach 600 to go back on interferon. I'm JAK- too and I gathered from a consultation several years back that HU works better for those who are positive. I only took interferon for about 3 years before I could stop it for this so far 25 month break. I am curious as to how long this break might be. My platelet count isn't perfect but has remained constant and not close to 600 as yet. I only had one reaction to interferon, the first injection, otherwise no problems. Thanks for your reply.

[Hidden]

I didn't realise you could go into remission, sorry I am not really that well up on all this, when you say remission does that mean your counts stablise to normal for an indefinite time without medication? I didn't realise that was possible with ET, I sort of just assumed that applied to acute blood cancers. I would be very happy if that was the case.

[ETphonehome]

I have been in molecular remission for over a year.

I started Pegasys IFN 45 mcg per week / fortnight in June 2008 and stopped in Spring 2010. My counts have been stable since however I still experience typical ET symptoms every now and then.

I have an FBC every month at my GP's which is analysed by my local hospital and my Haem advises accordingly.

My last counts saw my Platelets - 332, HCT - 0.427, HGB 137, WBC - 4.8, RBC 4.69.

[tarifa in reply to ETphonehome]

Perhaps remission isn't quite the right term. My blood tests are every 3 months, but my platelets are between 450 and 530, although within normal range when I stopped interferon. The biggest problem I had was keeping my white and red cells within normal range as they were on the low side when on IFN. But of course no one usually has a baseline to know what is normal for them before the MPN. I was on Roferon A. It will be interesting to see how long it is before either of us need to restart IFN. Thanks for your response.

[ggrana in reply to ETphonehome]

Hi etphonehome- congratulations on your remission. I have a question for you - how Long did it take for your numbers to start going down? I have been on this for six months and my numbers have not moved. My platelets are at 1.6 million

[ETphonehome in reply to ggrana]

Hi ggrana, My counts came down within weeks however they weren't high when I started. 800 is the highest my platelets have ever been and that was when I was diagnosed in 2003. My counts have been well controlled on all medications Hydroxy, IFN & Pegasys.

Biggest issue I have at the moment is neutropenia and one or two other ongoing issues that I've mentioned previously. Suppressed WBC's is very common while on Peg.

[ETphonehome]

Yes, periodic breaks to allow counts to recover are common on IFN.

I must say my experience of regular IFN was extremely negative. I had quite a number of debilitating side effects which badly affected my quality of life.

My experience of Pegasys, though not perfect has been a lot more positive.

[Marie95 in reply to ETphonehome]

Hi ETphonehome, can I ask you were any of your awful side effects with IFN apha of a psychiatric, central nervous system kind, and if so did you realise it was happening yourself? I have family members with these issues hence may put me at a greater risk, Its early days with IFN but any info would be most helpful.

[ETphonehome]

Hi Marie,

The biggest problems i had were with inciduous depression and various lupus like symptoms including rashes, concentration and memory issues as well as some uncomfortable physical problems.

[Marie95 in reply to ETphonehome]

Many thanks for the info, glad you're doing so well on peg