Hi Thanks to you both. I just felt so exhausted this morning, I couldn’t get up or shape up. I just lay on another bed after I got up. Was an effort to make breakfast, now need to cook dinner but a fly would have more energy!
I checked if Vitamin D interacted with Hydrea or warfarin which I’ll be on for life as well. There was no indication that it interacted with any of the two. Vitamin D was helping my energy level and my mood. Zinc combined as Hydrea a horrible chemotherapy drug just weakens the immune system, one of the side effects of Hydrea is fatigue, yet one of the side effects of Polycythaemia vera (PV) is also fatigue.
Years ago before any magic pill for this condition, people had to rely totally on blood extraction treatment which was safe.
My Consultant kept on in increasing the dosage of Hydrea despite the fact that Hct remained at 0.45. Only when I insisted that I couldn’t wake up let alone get up most mornings plus the fact I had significant hair loss, did he agree to meet me to discuss options.
I am back to 3 Hydrea 500 per week as opposed to 1×500 6 days a week after just over a year from diagnosis + 3 weekly to monthly visits to monitor blood readings. Have had 2 lots of blood removed & am due another checkup on the 31st Jan.
I certainly do feel much better since the reduction in Hydrea, apart from today.
Perhaps I’m not getting sufficient oxygen? Am indoors with central heating on all day! weather with icy conditions prevented me from going out, now thick drizzle has replaced it at the moment.
Apologies for all the details but others coming on here may be able to identify with my symptoms and method of treatment which I’m currently on.
Quite frankly, I’d prefer to have blood removal only (I was given that option during last Consultation before reduction in Hydrea) but asked if combo of both could be used for a start, Consultant gave me that option.
Just to mention how I arrived at Polycythaemia vera (PV) diagnosis…
1 in October 2020 I had a clot in my leg, hence the warfarin for 3mths initially, then a further 3 months. I was taken off the warfarin then. At beginning of July 2021 I developed a clot in my lung & went to A&E where the Dr there decided he wished to do an additional blood test on me which led to my diagnosis of P ruba vera jak2. mutitation Shock, denial, confusion followed. No support group until I banged on Haematology staff that I needed to compare notes, know what my limitations should be, whether I could go back to my art sessions…thought sitting for 3 hrs feet hanging down may be a hindrance so (not the best to do regardless of any condition (sitting for 3 hrs)!!! so here I am at this point & by the way, I am 75yrs of age. Maybe I should throw in the towel altogether!! at this age!!!