Diagnosis Update

[ajdolly]

Thought I’d come on and give an update as not been on here since my initial diagnosis. My ET Jak2 positive was upgraded to Prefibrotic myelofibrosis after having a bone marrow biopsy some months ago. I opted for Peg interferon Alfa and am coping really well on it. Platelets are now around the 290 mark from just under 1000! Only side effects so far are a little bit of irritation around the injection site and I’ve noticed recently my joints are often stiff and sore. Feel like I’ve done a big gym workout some days 😀. And my liver function bloods are quite raised at the mo but are stable so we are carrying on as normal with 4 weekly haematology appointments and LVT bloods at 2 weekly intervals.

Unfortunately the pain in my feet is just as bad. I’d kind of hoped once my platelets had reduced it would help with the blood flow in my toes/feet but it doesn’t seem that thats going to be the case.

I haven’t told many people about my diagnosis (close family and work) as I really don’t feel any different and don’t think it’s impacting on my day to day life. Not sure whether that’s the right attitude to have but I’m happy with that choice at the mo.

Oh and I also successfully claimed on my critical illness insurance very easily so if any of you aren’t sure whether to go down that route then you should def try!

Hope the rest of you are all keeping well 🤞🏼

[Paul123456]

What dosage are you on?

I switch locations left/right and stomach/thigh.

Also dab with alcohol wipe afterwards so don’t leave a blob on skin

Re liver, is your diet good. ie if you are ‘overloading’ via Pegasys then may need to adopt a liver friendly diet

Best Paul

[ajdolly in reply to Paul123456]

Thanks for that I’ll try that with the alcohol wipes. I’m on 180mg and have been for the past 12 weeks. They have said they would reduce the dosage if the LVT reach more than 3 times the upper limit. I think my diet is good tbh but will have a look at what I could be eating that could poss counteract the Pegasys 👍🏼

[Alexbits in reply to ajdolly]

The dosage is too high in my opinion, I'm on 45mcg and it works well (platelets down to 300 from 600-800 in 8 weeks), but I have same problem with liver. You may want to ask doctors to check your ferritin, it could rise along with your liver tests. Check this topic for more info healthunlocked.com/mpnvoice...

[Paul123456 in reply to ajdolly]

Be careful not to overshoot as I did. If your bloods are all within range I’d ask your hem whether you can reduce dosage. In my experience reducing Pegasys is a bit like turning a tanker.

[Manouche in reply to ajdolly]

Your haemo is right to keep the highest dosage your body can tolerate. The idea is not only to control your blood count but also to hit on JAK2’s head as hard and as long as possible.