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Is it OK to mix hydroxyurea with other pills in pill reminder.
Sorry that I completely missed your point in my previous post. No, if you are talking about STORING your hydroxyurea with other meds in a pill sorter (as M-F), no, absolutely not. Hydroxyurea is… read more
As Steve said, stick to the facts. And adapt the message based on the understanding abilities of the audience. But also, give yourself time to get comfortable with the diagnosis. I spoke to a… read more
Gosh, all of the above. I’ll also throw in “gout”…yes, I’ve had gout! In addition, vision problems, heart palpitations, stomach fullness. PV is the gift that keeps on giving.
I had my 3 monthly check up with my heamatologist yesterday and my iron levels are very low. She wanted to do an iron infusion but I opted for a course of iron meds orallly instead. I have been taking Hydrea for 2 years now and wonder whether this medication can deplete iron? I also take clopidergrel and eliquis as have a history of clots. I am 66.
I haven't had any major bleeds and am post menopausal so wonder why its happening? Any clues anyone?
I have had low iron for years. My hematologist doesn’t seem concerned and doesn’t want me taking iron. I have ET but wasn’t diagnosed for years even though my platelet levels were high.
Has anyone who does not have a family history and is healthy, actually had a blood clot due to their MPN.
I'm really curious because I hear a lot of hype about these blood clots, should I worry if I'm very healthy with ET and only 450 platelets.
If so what were your platelet levels?
Yes, In April 2022 I was admitted to the hospital with blood clots in both lungs and platelets over 950. I was referred to a Hematologist and diagnosed with ET.
I’ve also developed some kind of bump on my baby finger that is very aggravating and sometimes painful could this be due to Myelo? I’m always tired and doing very little can exhaust me. Platelets were over 700k, rbc was low but wbc was borderline normal. Hematocrit was low also when I had blood work done 2 weeks ago
Anagrelide stopped reducing my platelets so when I had the bone marrow biopsy, they put me on Jakafi. There are a couple of new drugs that may even be more suitable. You might want to try to see an… read more
I was not tolerating hydroxyurea after taking it for a few years. My MPN specialist is trying to switch me to Jakafi, but we are having a hard time keeping RBCs up while getting platelets down. I am still using low doses of HU to keep platelets down, but that tack is also pushing me towards anemia
We have talked about trying interferon, but my Dr is convinced that it is extremely hard if not impossible to get the drug right now. Has anyone else experienced a problem getting your hands on… read more
I have a sneaky feeling my doctor wants me to go on interferon and I see him tomorrow so I'll get an answer from him. (in Arizona). I started on hydroxyurea about 8 years ago then went to jackify then… read more
I have ET & latest platelet count was 1086.. my Haematologist has commenced me on Hydrea but this has made me feel so much worse with no response in platelet count, so i have stopped taking for now & will continue on aspirin & healthy lifestyle… ?!? 😊
I would start taking hydrea from 1,200,000. From that number on I would take hydrea and adjust the dose. Hydrea also prevents the disease from progressing
In addition to keeping the hematocrit level below 45, does the the experimental drug Rusfertide slow or eliminate progression of PV to myelofibrosis?
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