Polycythemia Vera: Just been diagnosed

Super advice and happy for you your “regime” works for you.

I've been treated for hypothyroid going on about 30 years. The found 2 nodules benign on thyroid.
I stumbled on lab studies that indicate a relationship with elevated rbc &ht. Especially when other tests are negative for pv. Do most of us have thyroid issues? It will be a question too to my doctor.

Wow, surprised to read that they did a bone biopsy immediately. My doctor said they can get the diagnosis from my labs/symptoms and the JAK2 being positive. He asked if I wanted a bone marrow test and I said will my treatment be the same, he replied exactly the same. He said it wasn’t necessary. I feel like the facilities do make their $$ off the sick sadly and we as patients need to be vigilant. Many may want/need the biopsy for their own piece of mind and that’s totally understandable. I’m just 56 and needed much time to process this diagnosis being I’ve been healthy my entire life. I wanted to do just phlebotomies and baby aspirin but my platelets shot up every time they took me off the Hydroxyurea. Just taking it 3X a week and hoping we finally got the dosage correct. So happy for you that you can be controlled without the drugs, truly!

I haven’t read about saline infusions? I’m 56 and recently diagnosed this past January. I actually feel good after the phlebotomies. The doctor tells me to drink water and eat something salty before I go. My platelets remain very high so I’m on the Hydroxyurea 3X a week currently. So jealous of those who can do without it. Good luck!

Update: I went off Besremi after the 6 first injections, but over these 2.5 months w/o drugs my liver went back to normal. (I did some milk thistle, avoided all alcohol and took a liver detox formula from the acupuncturist.) I am in the midst of changing doctors, which seems to be taking a long time (the clinic has been inefficient in many ways), but I may go back on Besremi for the long haul at a low dose to see if it can do the same trick of lowering platelets and getting me into the good HCT zone WITHOUT messing with my liver. The clinic is footing the bill for the first 6 (Medicare-denied) shots since they should have known that I had to self inject to get Medicare's coverage. Now I'll apply for financial aid from the drug manufacturer to see if I can continue. Both my doctor and the Mayo specialist at first said to try HU post Besremi, but when I asked about low dose interferon use, they consented. I have been comparatively light hearted while off the Besremi, but then a few symptoms appeared in a mild way, which tells me that SOME of what I blamed the drug for was due to the PV itself. Or so I surmise. By the way, the manufacturer had a different formula for reducing dosage in case of liver enzyme escalation from my doctor's , who just took me off "cold turkey." This tells me to always check with drug makers even though everyone says "of course you must defer to your doctor's opinion." I don't mind deferring, but I want to know if my doctor is really up to date on drug protocols.

Are gummies ok to take?? I was a regular marijuana smoker for approximately 20 years, but was afraid that that might have been a cause to my diagnosis and have not smoked since. I don’t miss it, but do get anxious with this new diagnosis. I’m only 48 with kids that are 15 and 11. I worry constantly that this is going to cut my life short which is terrifying.

Hi @sap21981. Before you try gummies, make sure you discuss this with your hematologist. It may be perfectly fine to take them but some supplements, including marijuana, gummies, etc., can interfere with some medications. It’s better to be safe and ask a medical professional first. 🙂

I can really appreciate your fear with having this blood condition and the worry about your future for your children. As a mom (or dad) it’s terrifying thinking you won’t be here for your kids! No matter how old they get they still need their parents.

My advice, after surviving a very aggressive form of leukemia, is to try and rework your perspective to accept that you now have a condition that impacts your life but it doesn’t have to define it! This isn’t going to take you out anytime soon and you’ve just started treatment. There are options ahead of you for treatment for a good long time. We all live with the possibility of some freak accident, like being hit by a bus! But if we lived with that level of fear daily, we’d never leave the house. ☺️

Thank you for the response…honestly I’ve done so well with not using marijuana that it probable just better to stay away from it… I’m really trying to turn a new leaf when it comes to what I put in my body!! I’m trying to cut out sugars and processed food as much as possible. I don’t really drink alcohol so that one is easy. Hopefully that will help with slowing down any progression! Thank you for your positive words. I’m so happy to hear that you no longer have leukemia…what a relief that must be.

I’m mid-forties with ET trending toward PV. My kids are seven and its been really stressful to think about how this will impact our future. I’m also a single mom, and have used gummies to keep the stress down on the past so I’m wondering how things will works once I’m on meds. These meds seem to have quite a few side effects.

Curious, but did everyone do a bone marrow biopsy before official PV diagnosis?

Great advice from @Lori. OV doesn’t have to define you. Someone else’s advice was that with meds it is very manageable and altho it sounds more defeatist but is not meant as such, you are likely to die with it not from it. Energy levels may some days be impacted, but you can adjust your activities. Sounds like you’re doing well changing your lifestyle - keep on going!