Hi @treeore Love the idea of your new toy for summer! You’ll have a blast out on your SUP board! Great for balance and core muscles too! Just watch out for crazy/rude boaters. They can have you taking an unexpected plunge. I’m happy to hear you’re working on sun protection. Being on immunosuppressants can really leave us vulnerable to skin cancer but doesn’t stop us from having fun in the sun.

It’s a shame that you had to stop the Besremi before the treatment was complete because it sounds like it was pretty successful in making the improvements in your blood numbers. I wonder (providing the insurance gets worked out) if a reduced treatment of one shot per month would help your liver and still provide improvement in your numbers. Would you consider self injection?

Sorry that your liver took a little hit but I see that’s listed as one of the potential side effects. Fortunately, livers can be remarkably resilient with their ability to recover. I went through similar with all the chemo on my crazy AML/transplant odyssey. Those pesky liver numbers became a focal point for my doctors. But now, 4 years later those numbers are back to ‘right down the middle’…though my liver does remain touchy. If I do anything to offend it (😅) it will be reflected in my next blood test. I follow a healthy liver detox diet too. Not sure whether or not it actually helps or if it’s just being off all the meds…but it can’t hurt.

I do believe there are other options besides HU to treat PV and high platelets. Jakafi comes to mind. That may be something to talk over with your doctor. Is there any particular reason why you’re not wanting to try Hydroxyurea?

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.

Hi all, Just an update to my Besremi adventure. After a few months off Besremi, my liver enzymes returned to normal. A few months later I had bad rib pain on the liver side that urgent care might be due to liver enlargement. The oncologist thought not, and an ultrasound of the abdomen confirmed it was normal in size at least. I also had a mysterious bruise which came only after a few days of pain in my inner calf. I don't recall hitting it, etc, but the bruise was enormous. Oncologist though that perhaps I'd taken too many blood thinning supplements, but he did not seem worried. (I switched from a doctor who did not like Besremi, was very afraid of its side effects, and really pushed HU. I'm hoping that moving to someone with more familiary with PV will help.)
Right now I'm waiting for financial aid approval from the pharmaceutical manufacturer. Otherwise the drug would cost me over $3000 a month for two shots, if I understood properly; I'm on Traditional Medicare plus Plan G plus Plan D. So the saga continues. I did not love being on the drug, but it did seem to bring down the HCT nicely, and did not do badly improving Platelets too. The cancer center which mistakenly gave me the drug in-house for 6 times, thus incurring a huge bill , has told me they won't be collecting that from me.