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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 21 hours ago | Replies (378)Comment receiving replies
Hi. I have ET Jak2, diagnosed August 2025. Just wondering if anyone here is using Interferon as their treatment? I have gut and a few other health issues which are being generally managed but it seems as I age, (60 yrs) more arise. I am worried about the potential side affects of using Hydroxy as mentioned in this group, but I am also worried if it will bring on more health issues. My platelets stayed around 870 for 5 months but they have jumped to 920 in the latest blood test, 2 weeks ago. I take 100mg daily asprin. My haematologist has advised I will start Hydroxy when my platelets reach 1000, although I can start now if I choose to. I asked him about other treatments and he mentioned Interferon. He advised the treatment is just as effective although usually used in younger patients, conceiving or pregnant women or those that can't tolerate Hydroxy. It is not a chemo drug, it's an antiviral so works by stimulating the immune system. It's also administered by injection. As with anything there are side affects. He mentioned flu like symptoms, nausea and fatigue which can affect quality of life. I've read that depression is another side affect and 20-30% of patients stop taking it due to the side affects. I'm thinking of trying it first and would love to know if anyone here is using it and what their experience is. Thanks
Replies to "Hi. I have ET Jak2, diagnosed August 2025. Just wondering if anyone here is using Interferon..."
@kat260 if you have any autoimmune conditions, proceed with caution with interferons. It can make those worse. Patients who have suffered from that effect advise to start with a low dose and increase slowly. Some people may take both HU and Interferon because the HU usually reduces the platelets quickly. I take HU at a low dose and it has been sufficiently effective to reduce my ET symptoms. I cannot say I have any side effects so I don’t think the drug is something to be afraid of. People have been safely taking it for many years. On the other hand, people with MPNs experience different symptoms, severity and reactions to drugs. I don’t think there are always clear reasons why so ultimately you just have to try the drugs and see how you fare. There is some research that suggests JAK2 patients may be able to reduce mutation level with the treatment. If you want to hear from patients on interferon, there are quite a few on the Health Unlocked platform.
@kat260 JAK2 burden diagnostic test can be repeated to track the effectiveness of your treatment. I am currently looking for the billing code to get my insurance to cover it.
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@kat260 Hello, I am 60 years as well and diagnosed with Et Jak 2 in November 2025 and since then on HU. No sideeffects yet and the platelets have significantly dropped. However I am thinking about taking interferon instead because of the chance to influence the mutation itself . I am gonna have and appointment with an Mpn specialist soon who has recently proven that it will work for et similarly to pv even for older patients . I will keep you up in the loop about his recommendations particularly regarding the sideeffects.