Interferon or not???

[SuET2017]

HI all, Im ET triple neg 2 years diagnosed. I initially tried Anagrelide but suffered side effects and it made little difference to my platelet level. So went on to Hyroxy, which works well for the platelets if I take 1000 daily. However, I have had nausea daily for 2 years, always have mouth ulcers, get vertigo, have started to get skin changes and so on....

My Haematologist has recommended that I try Interferon (apparently not Pegalated as this can't be given without trying the 'other' one first - this really annoys me). I am feeling a lot of trepidation about this. The potential side effects sound awful, and though I am sure I would get used to it I don't relish the thought of injecting myself.

I have read lots of articles including MPN Voice but I'd appreciate real feedback of peoples experience and management of using Interferon.

Thanks

[GolferCL]

Hi. I was diagnosed ET Jak + in June and chose “standard” Interferon over HU due to my age (43). I had mild flu symptoms for the first few weeks (took paracetamol and it was fine), and now I don’t take anything with the Inteferon, 4 days per week. Platelets down from 1000 to 465. Hope it works for you. I’m hoping to move on to Peg at some point soon, mainly to save on recycling all the cardboard from the packaging!!! Best wishes, Cath

[SuET2017 in reply to GolferCL]

Thanks for the positive response. Seems like you are tolerating the interferon well. The “side effects” leaflets can be a bit scary

[GolferCL in reply to SuET2017]

Yes it can, but better in the long term I think. I’m sure you’ll be fine with it, if you choose to go with it.

[Poppy112]

Hi diagnosed with PV December 2017 I also was started on the standard interferon due to my age and like you my consultant wouldn’t start pegasys unless the standard interferon was tried first. I managed 5 months on Roferon A eventually having to inject every other day before asking to be changed to pegasys, due to side effects and feel so ill all the time. Since being on pegasys all blood counts have normalised and as only injecting a low dose weekly I have no side effects and feel back to normal again. Pegasys has been great for me and long may it continue. I wish you all the best.

[francesb]

Hi, I'm mpn non specified with Jak2 and TET2 mutations. I take pegelated interferon with no problems except occasionally hot flushes the day after injecting and Hydroxycarbamide. Injecting is a doddle and easy and painless, a nurse showed me how. I did not have to try regular interferon first, maybe its peculiar to where you are. Good luck. Frances.

[Paul123456 in reply to francesb]

Frances

How well has Peg controlled your blood counts and have you had Allele Burden/BMB checked since starting? I’m also TET2 and been told TET2 may inhibit Peg on a molecular level but this is based on one very small data sample.

Best Paul

[francesb in reply to Paul123456]

Hi Paul, it has brought my platelets down from over 1000 to within normal range but is not touching my white count hence I am taking Hydroxy as well. I haven't had a BMB since starting this time (last year it didn't reduce anything so we stopped but started again this year). I'm sure having TET2 as well complicates things! It has meant I have no clear diagnosis. Good luck, Frances.

[SuET2017 in reply to francesb]

Hi Frances, I’m in Surrey. This is what my hamotologist said - procedure due to costs. I wonder if I can challenge this?

[SuET2017 in reply to SuET2017]

Oh and thanks for the reassurance on the injecting. I am sure I’ll deal with it!!

[francesb in reply to SuET2017]

Hi Sue, if your haematologist is not an MPN specialist I would get referred to one for a consultation. As to being denied on cost, I would certainly challenge this on the basis patients in other areas are getting Pegasys with no trouble. Good luck. Frances.

[Paul123456]

Sue

I went straight onto Pegasys and it’s been great, no side effects. Not sure why you have to go the INF route first, assume cost. If you have issues with INF they will upgrade you to Peg which is better tolerated.

INF/Peg side effects are very dose dependent. Ideally start at a low dose (I was 45 mcg every two weeks) and build up over time. I’m now 90 mcg weekly. Peg is weekly injections, i believe INF usually three per week.

I can assure you that there are a lot of very satisfied INF/Peg customers on the various forums so please don’t worry unduly. And there is a possibility that INF/Peg can slow progression but this is subject to ongoing definitive clinical studies.

Best Paul

[SuET2017 in reply to Paul123456]

Thanks Paul, that is reassuring. But still confused as to why I can’t go straight onto the peg? It seems logical to give the better treatment first. I am in the U.K. but I guess different trusts have their own guidelines. I will challenge it, but not sure it would make a difference. Moving seems drastic