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JAK2 Mutation - Effects and Questions
Blood Cancers & Disorders | Last Active: Jun 19 5:59am | Replies (303)Comment receiving replies
Many thanks your are really helpful for sharing this link.
Just wondering if Rusfentide is a form of chemoteraphy🤔
So glad to have had reduction in Hydrea, although I feel exhausted at times & my hair is still falling out in strands at a time.
Just a bit of interesting info!! On 18th March this year, I had a bruised muscle on r/h side. I was prescribed a very strong painkiller for 6 weeks, dreadful side effects from it so much so my stomach could only take water or tea. Had to put Hydrea aside + all meds with the exception of warfarin, for a few weeks. Had just started back on hydrea when my Haematology Clinic appointment was due. Lo & behold all my blood levels were within the normal range! Dr didn't renew my prescription on that account. 4 weeks later my next appointment arose, again blood levels ok, so roughly 2 months without any med or blood letting. 3rd visit Platelets were elevated, back on hydrea again 3days per week. During the off med period, my energy had improved tremendously, my hair ceased to fall out! But now back to square one even on 3 Hydrea in the week. I got a temporary reprieve from meds so perhaps might give other PV positive ppl a bit of a lift, a little miracle took place!
Replies to "Many thanks your are really helpful for sharing this link. Just wondering if Rusfentide is a..."
I found a little more information for you about Rusfentide and from what I’m understanding, it’s not a form of chemo.
It’s a therapy that mimics hepcidin. Hepcidin is a hormone that regulates how your body uses iron. It controls how much iron is available for essential body functions, like making hemoglobin and red blood cells. It also limits the amount of available iron for your body to use so your cells don’t experience iron overload.
So for PV patients it’s meant to reduce or elimate the need for phelbotomies. Because this is way out of my area I’m only writing from information I’ve read in the several articles I posted in my earlier reply for you. I have no idea if this works as a stand-alone drug or used in conjunction with other treatments.
That was encouraging that you were off the HU and your numbers were stable for a few months and your side effects disappeared. I’m sorry they’re back again. But it did show at the time the HU worked for you. Hopefully you adapt and the side effects lessen over time. I can empathize, I know how some of our meds can take the wind out of our sails. But at least we’re here and not pushing daisies up from the underside. ☺️ Hugs…
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I have been on Hydrea about 10 years. I had to really experiment to find out how to take it without too many side effects. This is what has worked for me so far. I take hydrea with lunch. i need to take it with a substantial meal that has at least a few carbs and I cannot lie down for at least 4 hours after taking. maybe this will will help but maybe not.