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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 2 minutes ago | Replies (585)Comment receiving replies
I just discovered this forum, and find it gives me so much information. I have ET. I have been on HU for about 19
years. Recently I have been dealing with an ulcer on my ankle that isn't healing, which I understand is a side-effect. My dr now wants me to stop the HU and start on interferon injections. Has anyone else had this experience? I do not want to start this new treatment, but unsure of what to do. I would appreciate any suggestions or options. Thank you for sharing.
Replies to "I just discovered this forum, and find it gives me so much information. I have ET...."
@sckf
Has your doctor looked into whether there might be any underlying vascular or circulation issues contributing to the ulcer?
@sckf I was on HU for 9 months. Suffered with a variety of symptoms. Glossitis, bleeding gums, tingling feet, brain fog, repeated UTIs, bone pain and extreme fatigue. Oncologist/hematologist would never acknowledge that this was all from HU.
Self referred to NPM specialist at Cleveland Clinic. He listened.
Put me on HU holiday. It’s been 6 weeks off HU My symptoms have disappeared except for bone pain. I’m 90% better.
Will start interferon once my platelets rise steadily above 600.
Seek out an MPN specialist if you have not. They are much more updated on better treatment!
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Hi @sckf Unfortunately, leg ulcers can be a potential side effect from HU for some longer term patients. Not everyone has this happen but when it does, the ulcers may be diffuclt to heal. For that reason doctors may opt to switch treatment or lower dosages in order to help the lesions to heal.
HU has been a front-line medication for years for diseases such as ET, PV and other MPNs (myeloproliferative neoplasms). It’s effective and cost effective. However, there are other drugs which are also used to treat MPN’s. Here are the most common: Besremi, Jakafi, Anagrelide and Pegasys (peginterferon alfa-2a) Each has a different mechanism of action.
The goal right now is to allow your skin to heal to prevent infection. I know from my own experience having to switch drugs that have worked for years to something new can be stressful. But you have a rather nasty complication brewing with your current drug and that takes precedence for the change.
In order that you may learn a little more about HU leg ulcers I found this article for you: From Dermnetnz.org. https://dermnetnz.org/topics/hydroxyurea-induced-cutaneous-ulcer
I also found some discussions with other members who have switched from HU to Pegasys. (That is one of the more common names for the interferon injections. Not sure which one your doctor will be recommending).
@chocolategirl posted this dicussion several months ago:
https://connect.mayoclinic.org/discussion/anyone-have-et-and-on-pegasys-instead-of-hydroxyurea/
More can be found with the results of this search. Lots of mentions of Pegasys https://connect.mayoclinic.org/search/
I’m sure having this ankle ulcer that won’t heal is pretty troublesome. Wouldn’t it be nice if you were able to have that heal again?