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We are all different, but I'm curious as to whether side effects increase after prolonged low doses or with increased dosage.
People in this group have different illnesses and different stages of illness. No surprise that reactions to meds differ. In my case, under treatment for ET for 3.5 years and about to turn age 72, I… read more
I was diagnosed with ET two years ago and have been on HU 500 mg per day since then. I had been having night sweats a few years before but as soon as my platelets dropped below 400 the night sweats disappeared. However; as soos as my platelets rise again they are back. Worried that's a sign I am progressing to MF.
Mmm, you are so right. I too find I get my best information through this and other support groups. My doctors tend to play down most of my worries, perhaps in an attempt to ease my concerns, although… read more
I have been experiencing it for about two years. Now that I am under treatment, should I expect the gout to go away if my numbers are reduced to normal levels?
Has anyone found alternate treatments to reduce gout attacks? I am already taking Allopurinol.
Robert, could you please update your data? My doctor prescribed for use Hydrea together with Allopurinol from begining even my urea accid was in norme 220, just to avoid increase when I start taking… read more
I have had ET since 2001, on hydroxyurea almost since the beginning and have just recently been diagnosed with PV.
My hgb and hct have been stubbornly high over the summer, with three increases to my hydrea in the past 6 weeks that have not significantly lowered them.
Had my first phlebotomy on August 11th, my second yesterday, am scheduled for a third on 9/5 and these will continue weekly (with labs preceding) until my hgb is down to a level acceptable to my hematologist.
I have tolerated… read more
I have had 11 phlebotomies over the past 8 months. I get very tired for at least a week after the procedure. Looking to enter a clinical trial program in January that hopefully will lead to no… read more
I have ET, and Dr. has prescribed Pegasys now. I have a Medicare supplement. Prescription was approved by them, but my co-pay without assistance is $369 for 1 week!
Usually the grant is for a specific amount so you can ask the pharmacy how long it will last. Many funding groups limit your adjusted gross income to 5X the federal poverty level. I think if your… read more
I would also like to add to this
Advocate for yourself! Educate yourself on your diagnosis so that you can ask the right questions to your doctor
Also tell your doctor everything about how you are… read more
Hi all,
I have an MPN specialist that I have seen for 3 years and visit twice a year. Recently, my insurance changed as a result of turning 65 and the MPN specialist is not in network. Therefore, I will self pay and see her twice a year. Recently, I made an appointment with a hematologist in network for blood work and for renewing Hydroxyurea script. My question is whether to tell the hematologist that I visit an MPN specialist?
Thank you,
Thank you, I am aware and my husband and I for financial reasons chose Medicare Advantage. I spoke to my MPN specialist about this prior to enrolling and found out what would be charged for each visit… read more
I was just curious if anyone has gone a more natural way for treatment and willing to share their story? I was diagnosed with PV in October and am exploring options. My symptoms aren’t really an issue at the moment but my numbers are continuing to rise. Thanks for any stories you may have to share!
Update in March 2024: I recently switched to a hematologist who is an MPN specialist. He switched me to Anagrelide, which reduces platelets without side effects of the Hydroxyurea I'd been taking… read more
Thank you for the clarification. My Hematologist is not responding to my e-mails. I have to call her office tomorrow to follow up. I don’t understand why they can’t just respond. Usually they respond… read more
