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JAK2 Mutation - Effects and Questions

Blood Cancers & Disorders | Last Active: Dec 18, 2023 | Replies (273)

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@loribmt

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?

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Replies to "You’re still having these horrible headaches? Is this relatively new since you stopped taking the Diclofenac..."

Hi Lori Due to have blood’s tomorrow will ask. It’s only when I was told to cut out pain killers and started HU will talk to them.

I did not tolerate Hydroxy and eventually was put on Jakify, which works well. I had flu like symptoms, 102 fever, it was very unpleasant. As suggested a medicine eval might also help. In the meantime you could try topical Diclofinic along with arnica and oral CBD.