Hello - I have Essential thrombocythemia (ET) JAK-2, diagnosed for nearly a year. It now looks as though I may also have an autoimmune disorder which is causing symptoms that I previously put down to my blood disorder. I had been having pegasys injections but am on a treatment “holiday” due to rising LFT levels.
I have read that interferon should not be used in people with autoimmune conditions. Has anyone had experience of treatment for Essential thrombocythemia (ET) with autoimmune disease?
Hello @HelRol, I’m sorry to hear about your possible autoimmune disorder on top of your blood cancer diagnosis. Sometimes it feels like one thing after another, doesn’t it?
I hope that other community members might be able to share their experiences, but in the meantime I’m going to tag in our brilliant @BloodCancerUK_Nurses as they might be able to give you some insight into the more medical question you have around the use of Interferon with an autoimmune disorder.
If you wanted to, you’d also be most welcome to give our support services a call or drop us an email. Our telephone number is 0808 2080 888 and our email address is support@bloodcancer.org.uk.
Take care,
Ceri - Blood Cancer UK Support Services
Dear @HelRol
I thought I would check in and see how you are doing as you mentioned you were on a treatment holiday? May I ask whether you have had any definitive answers from either your Haematology team or the team looking into your potential auto immune condition?
I do hope you have managed to get some answers. The key when there is different teams looking into your health is that they talk to each other and that there is a multidisciplinary team approach. This along with monitoring your Essential thrombocythemia (ET) and considering alternative treatments for this if needed.
As @Ceri_BloodCancerUK mentioned, do give us a call if you would like to talk things through.
Best wishes
Gemma