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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 2 days ago | Replies (675)Comment receiving replies
@esperanzam
Hi Sandy, my doctor said the shot was fine but if I needed surgery I should come off meds. He also said 2 weeks of prescription anti-inflammatories is ok. Who knows?? We get such conflicting guidance it is so difficult to know what to do.
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@dewz13
I agree. We do get conflicting information and I don't think a small amount of anti-inflammatories will kill us but I know long term like Advair or such is not advised. And I think our experience teaches us a lot. For example, when my platelets suddenly went up over 900,000 with the same dose of Hydrea... the funny part is that they didn't tell me anything about the steroid shots they knew I was getting for my back and hip but one day, when I mentioned getting a steroid shot, a PA casually mentioned that they give them as treatment for those who have too FEW platelets to get them to climb!
There does not seem to be a handbook for this disease. Grateful for the facts or suspicions I have been able to piece together. 🙂