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JAK2 Mutation - Effects and Questions

Blood Cancers & Disorders | Last Active: Jun 19 5:59am | Replies (303)

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@jola13

ET - prefibrotic myelofibrosis JAK2 - Chronic Myeloproliferative disease on 26th day HU 500mg per day and 75mg Aspirin plus my usual meds.aluprinol, sertraline, Lyrica, etc
- Ive been having a week of bad Headaches - extreme tiredness - and the last couple of days extreme pain in my shoulders, hips and feet - not just joint pain but deep bone pain.
- Have been told to stop Diclofenac for pain on my last bloods visit - can only take Cocodamol I have all strengths - lowest doesn't work - and if I try the higher doses I am like a zombie. I have moments where in an instant I have to stop what Im doing and crawl into bed.

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Replies to "ET - prefibrotic myelofibrosis JAK2 - Chronic Myeloproliferative disease on 26th day HU 500mg per day..."

You’re still having these horrible headaches? Is this relatively new since you stopped taking the Diclofenac or was it when you started the HU? You mentioned before that you do have occasional migraines but nothing steady like these recurring headaches.

With all these new extreme pains you’re having in your bones, along with the headaches, this just feels as though there’s more going on that should be investigated.

I’m looking at your list of meds and wondering when’s the last time you had a med re-evaluation. With so many strong, pain pills, one of which contains codeine, another medication for gout, an anti-anxiety med (which can really mess with your serotonin level). You’ve just added HU to the blend, which incidentally, can increase the uric acid level which causes gout.
Not sure if this is related in any way to the Hydroxyurea but I’m wondering if you’re having an interaction with any of these drugs. Were you pretty ok up until the time you started with the HU?
Several members in the forum who had negative side effects from taking HU checked with their provider for advice to stop taking it for a few days or a week to see if it made a difference. It did make a difference and then their dosages were lowered. It would really be in your best interest to let your doctor know the issues you’re having.
Have you talked with your provider about you headaches and body pains? When’s the last time you had bloodwork run?