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[Tylerdog1]

Had JAK2 ET for 15 years now, with no symptoms and only being treated with Venesections. It is now changing to Myeloid Fibrosis, still with no symptoms - but nows the time to start taking Interferon to manage it . Wondering what people’s experience of taking this is

[Swede]

Hi,I have not heard that us with ET needed venesections before. Ialso evolved into MF but was told it is too early to change medication.I have really no idea..sorry.

[fee13]

The general consensus is ET does not require venesections and interferon is most effective taken in early stages of MF (myelofibrosis) & possibly alongside ruxolitinib to help halt the JAK2 allele burden.

[Aneliv9]

How old are you?

[Tylerdog1 in reply to Aneliv9]

I’m 55

[Aneliv9 in reply to Tylerdog1]

What is your doctors opinion about your future with MF? I just try to figure out how doctors see this disease and it's future. That's why i am asking

[Ebot]

Hi. I’m really mystified as to why you have had venesections with ET.

ET is characterised by a high platelet count so any drug interventions like Hydroxycarbamide or Interferon are aimed at reducing that high platelet count.

PV on the other hand is characterised by a high haematocrit count and therefore interventions are aimed at lowering the high haematocrit level. First line intervention for PV is venesections. It’s possible for people to have PV but also have a high platelet count.

When it comes to MF there are a range of drug options and knowledge about the management and treatment of MP is increasing all the time. I’m not sure that Interferon is necessarily now the drug of choice.

I just wondered whether you are under the care of an MPN specialist.

[Threelions]

Hi,

I was put straight on peg Interferon after diagnosis and, in answer to your question, I find it very manageable.

I’ve not heard of anyone having venesections with ET, more that it is treated with low dose aspirin and/or accompanying drugs in order to keep your platelet count down.

Still fairly early days in my journey but reply to some others that have replied to you in order to get some great advice moving forward 👍

[Manouche]

Apparently you haven’t been told you had PV as well.