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I was up to 1500 HU in two months of diagnoses and had more than 12 phlebotomies, 1-500 capsule in AM & 2 at night. Levels were great 42-43 range and because my levels were good for the last 6 weeks, but RB Distribution was off the chart & still had side effects. I asked if there was another medication because I was always short of breath, aches and pains always, & fatigue all day/night. Dr. said nothing else better than HU and those symptoms were PV. Dr. backed off HU -500 at PM and two weeks… read more
I often go into appointments with written questions, and then I write down the answers to help me understand and to relay to my kids.
We are all different, and your best source of information is your physician, as to what he is doing and why.
Once I started medication the phlebotomy’s weren’t necessary
Robert, I wonder if you are iron deficient…over zealous phlebotomies could be the culprit. I became iron deficient under the same conditions, also while taking HU and frequent phlebotomies. I started Pegasys interferon and felt much better. Might be an option!
Sorry, Robert I can’t help you on this.
I'm 34 Having Myelofibrosis Grade 2. I'm On Jakavi 20 Mg For 6 Months. Initially It Was Good But Now My Platelets Are Rising Again At 700000
I Have A Jak2/ET Diagnosis From My Bloodwork Done By My Oncologist Is There Any Info To Be Gained By Bone Marrow Biopsy? BMB Advice?
Does Anyone Take Supplements That Help Lower Platelets? Thanks
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