I’m only sharing because no one in my world can really relate. Even I don’t know how good or bad it all is. I won’t see my hematologist until July. All my “flags.”
Sending you a virtual hug 😊I'm really surprised that you still haven't started venisections. And I feel that 3 months is a long wait, especially when you're obviously feeling anxious and have had no medical answers
I don't know what NAC is, so I can't respond to that.
I'm sure Hunter will respond with some very good advice, and he's in USA too
Thank you for the hug. It means so much just for someone else to understand. My husband gives little support. Mainly, I think, because he doesn’t want to face it and has no idea how to “help” when I’m upset. I’m not so much upset today. More bewildered and not knowing what I should feel. So every hour will bring more acceptance and that will slip back into somewhat of a denial. 🙈 Until the next blood draw.I’m also thankful. My itching has been non-existent for the past week and I physically feel fine. 👍
I know I need to find a MPN specialist. I’d love to have a personal referral from a patient instead of picking out one randomly. There are not many too choose from, all are a few hours away and my insurance is crap. All things that have me procrastinating.
Your comment on venesection encourages me to make something happen instead of waiting for months and blindly trusting one doctor.
Thank you for your response. I’m so grateful for this group.
Unfortunately, us guys do not tend to do well when perplexed about what to do. We want to fix things. When we do not now how to fix the problem, we often get frustrated and retreat into our caves. It is hard for some of us to realize that we do not always need to fix the problem. Sometimes we just need to be there and listen. Easier said than done.
Do be aware that all of the CBC numbers will rise and fall for a number of reasons. It is the trend over time that matters. Jut eyeballing the numbers, it looks like you are positive for erythrocytosis, leukocytosis and mild thrombocytosis. Not uncommon with PV. The primary risk factor is the erythrocytosis. Cakeface is correct, you should be initiating venesections (AKA therapeutic phlebotomy) as a first line-treatment for PV. This is standard treatment for PV. At age 60, most MPN Specialists would also start you on cytoreduction as well.
Regarding cytoreduction, hydroxyurea is not the only choice. While considered a first-line choice, its use for PV in the USA is considered off-label. It i is not FDA-approved for PV or any MPN. The two FDA approved meds for PV are Jakafi and Besremi. Jakafi is considered a second-line treatment (very expensive) but is very effective in treating certain PV symptoms (e.g. pruritusritits - itching). Besremi (ropeginterferon alpha 2b) was just approved in November 2021. It is a first-line PV treatment that offers significant advantages over other treatment options. (See previous posts on Besremi). It can be a challenge to get approved as it is new and very expensive. There is an alternative to Besremi that is also another first-line option for PV - Pegasys (PEGylated Interferon alpha 2a). Pegasys can be easier to get approved oninsuranceuancve programs sine it has been around for a while and costs about 1/3 of Besremi. Both of the interferons are considered effective long-term treatments for PV.
N-Acetylcysteine can certainly help with inflammation. That may help with the thombocytosis a bit, but NAC is not cytoreductive therapy. Aspirin is an anti-platelet therapy, but that does not mean it reduces the platelet levels. Aspirin reduces the thrombotic activity of platelets. It is an important part of treatment for PV.
Strongly suggest you get to see Specialist ASAP. Most hematologists do not have the KSAs to provide optimal MPN treatment. Just in case you did not see it, here are two lists.
It will help if you know you are taking the actions you need to take to manage PV. It most certainly can be managed. You can take action and make things better.
Hi Barbie! Here's a hug all the way from Israel ❤️ My hematologist always pays attention to my hematocrit more than anything else and yours is very high for a woman. The standard here is 45, and not the slightest bit higher. In other places the number for women is 42. So I would suggest getting a phlebotomy ASAP. You may need more than one in a relatively short time to bring your numbers down. And then, as Hunter suggested, you should think about getting on some kind of medication. I personally have been on several different ones and now on Besremi. Pleased with it so far.
Wow! My first hug from Israel! Thank you for your input. This is exactly what I needed. I haven’t had any “numbers” to go by. When I asked my doctor (2 months ago) she would not give me anything specific. Just that she didn’t look at one number. When my numbers went up consistently for 3 or 4 blood draws then she would make some changes in my treatment. 🤦♀️ This did not seem like the best plan to me… 3 or 4 blood draws and she only does them every 2 months. So 8 months from now we might make a change? I’m not sure how long it takes for things to get drastic. I would like to think positively but common sense says that things won’t probably get better by doing nothing. TODAY - I will be looking for a MPN specialist.
Hi Barbie You will find a lot of great folks in here with good knowledge and advice! I agree with others that you get a phlebotomy asap. My MPN specialist wants me to stay at 42 and below.
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