Interferon advice please

[jazzyb]

I've had PV for eleven years and recently started on Interferon Peg. I have had two injections so far (dose 90 per week) with no improvement whatsoever. My red cell and platelet count have in fact got much worse. Is it too early for the Interferon to be having any effect? Does it take longer than this to kick in? I'm so worried that it won't work at all. Prior to Interferon I have been on Hydroxycarbamide for six years which controlled my platelets but was no longer working on my red cells, it could have also contributed to a skin cancer on my face so the decision was made to swap to Interferon. I do have a previous history of Melanoma and Basal Cell carcinoma prior to Hydroxycarbamide. I'm booked in for venesection tomorrow but this is not a long term solution for me as they really struggle to get blood out.

[Paul123456]

Interferon can take a long time to work, as a general rule HU is much quicker.

My WBC dropped first after about 4 - 8 weeks, Platelets took about 3 months to hit normal and RBC about 4 to 5 months. And imo that was pretty fast for PEG!

[jazzyb in reply to Paul123456]

Thanks for your reply Paul, that's reassured me ☺

[Susana7]

Interferon is slow acting. It took one year for my counts to fully normalise. The platelets started going down straight away but the HCT went up for 2 months before eventually reducing. It is far too early to assess whether it is working for you. Just give it time! Good luck. Susana x

[jazzyb in reply to Susana7]

Thank you Susana. Panic over! ☺ xx

[Marossi]

Dear Jazzyb it took a year on Pegasys before my blood counts were brought under control. My haematologist had to keep increasing the dose (I was on 135mcg weekly at one point) and even supplement with venesections. I was worried of course but he told me to be patient, that interferon is a slow-acting drug, and he was absolutely right! Now that my blood counts (platelets and haematocrit) are within normal range I have even been able to reduce the dosage to 135mcg every two weeks - and no more venesections, thank goodness. So hang on in there!

[jazzyb in reply to Marossi]

Thank you for your kind words Marossi. I feel much better now ☺

[jointpain]

Hi jazzyb, lovely name. My wife has Myelofibrosis and initially was on hydroxy to lower her platelets, which didn't work, she then went on Anagrelide, which works really quickly. May be you could benefit from Anagrelide? Though I am not sure if it lowers anything other than platelets. We have asked for her to have interferon as it can put early Myelofibrosis PV and ET into remission according to pvreporter.com/interferon-t...

The haematologist said it was not worth doing as she wouldn't like the side effects!? Which is an odd thing to say.

Hope you get some good results soon.

[Paul123456 in reply to jointpain]

I’m on 90 mcg Pegasys and no side effects.

Pegasys (Interferon) does appear to offer a chance of slowing, even ‘reversing’ early stage MF. I’m not remotely qualified to offer advise but recent trials have indicated successful results with lose dose Peg (say 45 mcg weekly) combined with low dose Ruxo.

ash.confex.com/ash/2018/web...

I think the problem Hems face is that that they tend to ‘look through the rear view mirror’ - ie their advice is based on established clinical data. As patients we have a different risk:reward perspective and are more swayed to second guessing what the best treatment plan may be going forward.

Best Paul

[jazzyb in reply to jointpain]

Thank you jointpain. I've heard of Anagrelide but my consultant never suggested it as an option. He seemed to think Peg Interferon was the best way forward. I was on Hydroxycarbamide for six years which worked really well on my platelets but was no longer controlling my HCT. I do hope your wife is OK. It may be worth asking her consultant about what Paul has mentioned. He certainly seems to know his stuff when it comes to MPN's.

[JSKly]

Hello. It does take a few weeks for Pegasys to kick in or it did for me. In my experience most changes of meds took a few weeks. I too am on 90 Mcg. I do hope Pegasys works well for you.

[jazzyb in reply to JSKly]

Thank you JSKly, good to read another reassuring post 😁

[JackLina]

Because we all respond differently to all medication it really isn't possible to make blanket statements about the effect of drugs. I can tell you that my response to most drugs is negative as it was to hydroxycarbamide. However, after 3 weeks of 45mcg of Peginterferon, my platelets had started to reduce. As far as I know, that has continued and I now only inject 45 every 10 days. I will have another test shortly and see if platelets have raised again. When it was reduced around three weeks ago, my red and white cells were low. Let's hoe these have levelled out! ATB. P

[jazzyb in reply to JackLina]

Thanks for your reply PenelopeMK, glad Peg is working well for you and hope things level out soon

[shiftzz]

Been on pega for about 18 months, still not fully working, still on 6 hydro a week plus monthly venesections, numbers fairly stable but hct still above. 45,