@ptz71
My Mom told me yesterday she was put on 60mg daily and she weighs about 120 lbs wet, lol..it put her into a psychotic break at a UK airport. My Dad had no choice but get cops involved, she wouldn't give him back his phone to talk to my brother who was picking them up in Newark since he lives 10 mins away. Je wanted to prepare him for what she was like.

She was mortified & embarrassed and doesnt remember a thing. When she heard our MDVIP doc put me on 80mg day to start while waiting for dx after the TAB. She kind of freaked, were the same build, i just have mor muscle mass and so afraid to lose more of it.

I'm waiting for his call this am, to ask why 80mg and why not much less and put methotrexate in the mix. I suspect he was scared for me going blind. My eyesight has deteriorated pretty significantly and a lot of pain in my left eye, temple, jaw, neck, shoulders etc.

However it doesn't matter, my Rheumy will call me from my note to her in MyChart. She's been amazing and will definitely work on a med cocktail that will be a little better with less bone and muscle mass loss. Ive had so many symptoms for 3+ years with the Hashimotos, Hypothyroidism, 4-5 disc herniations in neck & lower and my L5 disc has been disintegrated and not there for a good 30 years now. I'm getting to the point of cant take the pain and want a cortisone shot but freaking insurance makes it SO hard to get approval.

My Hemoglobin went up to 19 at one point on 2023, tested again 6 weeks and later and he was shocked it wasnt normal, sent me to the first hematology oncologist who was a comple and utter condecending asshole and diagnosed with PV. Found another hem/onc who ignored / didnt listen and told Unemployment Inwas fine to work. They wrecked me with taking 5 pints in about a 2 month time frame. I think that would wreck a lot of ppl. Went to a 3rd oncologist after a recommendation from a trusted Cardiologist who took car of my dad, BIL and sister. being wrecked by them taking too much blood and then I couldn't get up a flight of stairs without having to rest. Im a very active person, ski, hike, kinda don't stop moving or doing something, part ADHD, part single Mom with 3 kids and no help from exes or family so I was used to doing everything myself with no help.

Love these forums, the hear i thought I had because 2 docs told me, bad docs. I kept saying I don't think I have it since Im Jak2 neg, less than 5% with Jak2 neg have PV.

The next wonderful hemo/onc doc connected dme eith him, he listened really listened when many will fall silent with women and say your just depressed so take this pill and youll be fine. No thank you. My BP had been going haywire from high to low, they picked meds for high, it was a crap shoot..did end up working/helping. I went off them 2 months ago and my BP has been great. A win!

The new hematology oncologist got me in for a bone marrow biopsy within the week..Hurt like a mother effer 😉 but clearly showed NO blood cancer whatsoever. we never were able to get a dx other than it must be secondary PV and there something wrong in my body, they say usually cancer. Nothing has been found, its ticking back up methodically and with no answers as to why. Whatever, ive got bigger fish to fry with the GCA & PMR.
My spine docs/pain mgmt group are wonderful, very sports oriented which is what I need, my goal is to ski well into my 80s, ive skied with 90+ year olds, my idols. I skied next day with a cast on my arm from a stupid fall with my siblings. Ski patrol wanted to "Locate" it for me on the slope. My gut said no way, took my glove back, skied down with my sibs with one pole, went to medical and right away he said, I think its broken and got to Rutland hospital in VT. Got casted and he was a skier so talked to my folks. I agreed to no jumps, no woods skiing and id be careful. I obeyed for the most part 😉 after id broken my upper arm/shoulder swinging from a vine & fell 25 ft, they wanted me in traction. Mom knew id be miserable stuck in a bed for 6 weeks and we went to an ortho guy who used my arm muscles as traction with a very heavy cast, brilliant solution. He said no sports for a good 2.months. I was playing kickball in the neighborhood the next day or maybe 2 days later. If my Mom ever knew she'd kill me for yet another broken bone so I told a fib about how it happened. She would have died seeing me climb trees 3 stories high so xi could say I neat all the boys haha. Slightly competitive in a nice way though.

So sorry, what a tangent I took down memory lane, last night my daughter told me im bad ass, kinda like it ❤️

I will use this group a lot since the blood cancer group was invaluable to me and its so nice having a tribe around you for support & advice.

God bless and feel better soon 🙏