VTarpey

[VTAR24]

Hi just wondering if anyone can advise me I'm on 90mg of interferon every 2 weeks since March this year my platelets are fluctuating between 850 and 1000 since then I was hoping by now they wud be dwn a bit more does anyone know if this is a slow process or wud I need to increase dosage I am Calr mutation I feel fine just gave started getting a tingling feeling in fingers I'm seeing my hematology nurse this week I suppose I'm a bit frustrated hw slow this is going or maybe I shud just go with it just looking for anyone else's option tks

[Mishie14]

My experience taking peginterferon for ET JAK2+ is it takes a while to experience change in platelets. I started at 1.3M and am now at 705K after taking the drug since March of 2023. The low dose of 45 at the start didn't do much to platelets but it did start a slow trend downward. A bit more downward at 68 last December but latest change to 90 in June showed platelets going steadily down now between 25k-50k per week. Platelets are affected by other things including time of day blood is drawn so I am consistent in time of day blood is drawn. There have also been times when platelets go up as when I got a sinus infection. Low dose and slow going has worked for me. I have had nominal side effects after trying HU and then anagrelide which did cause serious side effects. My hematologist always says to look at trends and as long as the trend is down, it's working. Wishing you good luck in your journey.

[hunter5582]

It is not unusual for PEGylated interferon to take time to reach targets. This treatment is a marathon rather than a sprint. Keeping all of your goals in individual is important. There is more to the treatment than the numbers on a lab. Your other goals are equally important, feeling good, reducing risk of progression, and secondary MPN symptoms. The tingling feeling in your fingers is a common MPN symptom. It can be either microvascular or paresthesia. A knowldgeable MPN Specialist can best advise you regarding interventions.

[VTAR24 in reply to hunter5582]

Tks for your your reply Hunter also what does microvascular or parenthesia mean ?

[hunter5582 in reply to VTAR24]

The tingling in the fingers you describe can have different causes. The symptom can be causes by circulation issues in small vessels and my nerve impingment. Here is a short summary. mympnteam.com/resources/num...

[Bridie123]

Why are you only having it every two weeks? I took 90 every week till the numbers came down and now I take 45 every week. I am hoping to go to two weekly soon. Ask your haematologist.

[VTAR24 in reply to Bridie123]

Because that's what consultant put me on maybe I need to do what u did and doing tks

[light]

Hi, we are all very different and react different to same medication. Interferon can take time to work. The best is to talk to your MPN specialist and see what answers they going to give. Wishing you well.

[cycle14]

Sorry for late reply. I'm ET jak2. Been on 90mg every 2 weeks for 17 months. Platelets were over 1000 now 525

[VTAR24 in reply to cycle14]

Oh that's good to know as I was thinking mine are slow coming dwn as on 90mg every to weeks since March this year and are always staying between 900 and 1000 so it obviously takes a while to see a right drop my hematologist isn't to concerned as all other blood work is good