Itching intensified and in Pegasys

[DN515]

Hello!

I have been on Pegasys for almost a year now, diagnosed PV Jak2 positive 5 years ago. I have been relatively symptom free with the exception of some minor itching over the years... the past few days the itch has intensified and it is so uncomfortable 😣. Does this typically mean my numbers are high or the pegasys has stopped working???? Or could it just be the winter weather??? I have an apt for a blood draw next week and visit with my dr the following week... but ugh!!!! Any others experience this?

[hunter5582]

There are too many variables to really answer your question. It could be you are being exposed to a trigger that is making the itching worse. Maintaining a healthy skin moisture barrier is very important. You can use ceramide-based cleansers and creams for this. Avoiding known triggers like laundry products that contain perfumes and dyes can also help. With Winter coming. exposure to drier air can also contribute. If you are experiencing aquagenic pruritis then avoiding the sudden temperature change is very important.

Your concern about whether the Pegasys is still working is something to talk to your doc about. It is pretty well known that Ruxolitinib is the most effective medication for PV related pruritis. A MPN specialist would be the best doctor to talk to about this as they are more familiar with the treatment options than a regular hematologist. None of us can tell you whether RUX is an appropriate option for you. Suggest you talk to the MPN Specialist about that.

I experience itch related to eczema, likely exacerbated by the JAK2 mutation - systemic inflammation. I do all of the preventive option above. They really help a lot. When I do get an outbreak heralded by the itching, I use Eucrisa (crisaborole) to treat it. It is very effective and stops the problem dead in its tracks. My dermatologist says it also works for pruritis. That would be another thing to talk to your doc about to see if it might help you.

Hope that helps.

[DN515 in reply to hunter5582]

Thank you so much for your response. I do have an apt with an MPN specialist scheduled for February and I will definitely bring up the itching. Thankful for the insight and support!

[Chicagopv]

All I can help with is itching. I had terrible itching with PV and found that Benadryl (OTC), Atarax/hydroxyzine (RX), and when at its height, Emend (RX, expensive, off-label) help. I also got light treatment. That's when I was taking hydroxyurea. Now I'm on Jakafi and itching is much much better.