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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: Nov 1 2:25pm | Replies (164)Comment receiving replies
@janemc I had what I think was an extreme autoimmune reaction (joint / tendon pain and stiffness, muscle weakness, including difficulty swallowing and severe swelling with red sores on ankles) after taking HU for 1 month. My hematologist said he didn’t think it was possible that my symptoms were caused by HU, but by another medication. I stopped both for a few weeks, but restarted HU after my platelet count doubled. I then had a similar reaction just a few hours after taking the second daily dose. I saw him a few days ago for a follow up, and he finally said he was going to believe me! So big of him! But at least I don’t have to continue looking a second opinion. Now he is hopefully going to work with my rheumatologist to come up with a treatment plan. They are considering Jakafi, but will probably have to try anagrelide first.
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@lisanell I’ve been taking HU for 10 years (1000 to 1500mg daily) and it definitely caused redness around the ankles as well as ankle ulcers if my dosage went over 1500mg. Even under 1500mg I had to be very careful about scraping my ankles. These ankle wounds would take a while to heal and would require careful attention. Trust me these symptoms are HU related. I’ve been off HU for 8 weeks and my ankles are no longer red and an ankle ulcers I got cleared up quickly.
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@lisanell
Were you taking Droxia, the name brand, or the generic HU? Congrats on your determined efforts that obviously paid off. It's not enough that we have this condition, but when we have to "prove" the horrible effects that we live with before a doctor believes our situation, that is unacceptable. Think of those who are not a brave as you and accept the effects of the drug because the doctor did not acknowledge the problem. There should be some type of response available to this type of situation. However, right now, the only option is to find another Hematologist. Again, you did well, I hope you find the answers, if not try to look elsewhere.
Best of luck to you!