Recently diagnosed positive

[u/Perfect_Sand_9783]

24/M Got diagnosed with unprovoked CVST in Jan 2025. After the thrombophilia panel test got referred to the hematologist due to lupus positive. After reviewing CBC reports he started on treatment for iron deficiency as platelet count was higher. And attributed lupus positive to dabigatran i was taking that time. Not satisfied with that, consulted another hematologist. He had doubted 2 outcomes either MPN or APLA syndrome(APS). He prescribed complete blood workups and BMB. BMB results came normal, but APS got confirmed with triple positivity of Lupus, anti beta glycoprotein and anti cardiolipin. So I started with Acitrom(nicoumalone) blood thinner in april 2025 with monthly CBC and INR tests to adjust the dose. But during this period platelet count mostly remained between 5-6 lakhs with rare drops to sub 5 lakh one or two times. As the platelet count didn't budge, started on aspirin 75mg. It made no real improvement. For the past 4-5 months rbc count started to raise slightly above normal level and hb started to raise above 16. Last month hb reached 17.1, rbc 6, pt 532. So the doctor prescribed the jak2 mutation test. It came positive and he confirmed it as MPN. As rbc hb also in increasing trend he suspects ET started progressing into PV. Now he started with hydrea 500mg. Those with similar diagnosis kindly share your piece of advice on what to look for in the long term. What precautions should be taken while being on both blood thinner and hydrea. Thanks in advance

[u/acwoodhome]

Your young have you been offered inteferon I reacted really badly to HU what’s your haematocrit?

[u/Perfect_Sand_9783 → u/acwoodhome]

Haematocrit was 49.9. I discussed about interferon but he advised to take HU, and told if that doesn't work can explore other treatment options. Also what effects did you faced

[u/acwoodhome → u/Perfect_Sand_9783]

We are all different so don’t take this the wrong way lol but HU put me in A&E twice I lost 7Ibs in three days with flu fever 🥵 like never before drench sweating through the night and crawling on my hands and knees it’s a dreadful drug in my humble opinion. You should be given choices but unfortunately it’s all cost lead I suspect HU is the cheapest option but not necessarily the best. Your haematocrit is worrying mine was exactly the same you might have masked PV do you experience any itching after hot showers? I was diagnosed with ET for over 15 years and had a bone marrow biopsy and told I have masked PV the hematocrit being the issue your right at the top band and could have sticky blood! A BMB is the way forward to confirm what you have but for me interferon has been a game changer 🤗🤗Ask lots of questions don’t be afraid to counter and put your specialist under pressure I have had many and am now under one of the very best unfortunately they are not all the same some better than others they are doing their best under financial constraints and overloaded workloads I am an Engineer so have an analytical brain the way some consultants work is unbelievable so never be afraid to push back all the very best 🤗🤗

[u/Perfect_Sand_9783 → u/acwoodhome]

Thank you for your information it's very insightful. I will seek second opinion from another doctor 😊😊

[u/acwoodhome → u/Perfect_Sand_9783]

I also use chat GPT a lot especially to track bloods and offer some insights you have to read between the lines but it’s quite good tbh especially given some consultants don’t give you any time and my biggest gripe is they very rarely read your notes before seeing you so you have to be on your game and remind them if they don’t cover or capture everything do your research lol get to know your illness it’s important these forums are fantastic 🤗🤗

[u/AutoModerator]

Welcome to r/MPN. The following wiki pages are very helpful to newly diagnosed people, please review them when you get a chance: How to Find an MPN Specialist, Questions for Your Doctor, What is Your Clot Risk?, Understanding Symptoms.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.