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Essential Thrombocytosis: What amount of hydroxy do you take?
Blood Cancers & Disorders | Last Active: Apr 14 10:05pm | Replies (77)Comment receiving replies
I’m also thankful for this group! My very supportive husband found this for me. I was diagnosed with ET and Jak2 mutation in 2019, but decided with my dr to just keep an eye on it and continued with bloodwork every 4-6 months. (During this time I was helping with my brother who has Mantel Cell Lymphoma. And caring for my mother in law, who has Alzheimer’s.). Fast forward to September 2023, my bloodwork numbers were very high, so my dr referred me to a hematologist/oncology. To date, I have had 3 phlebotomys and take Hydreau (2 500mg) each day. I have also had a bone marrow biopsy, where I am positive for Polycycemia Vera (PV). Tried taking the Hydreau in the afternoon, but was so fatigued I had to take a nap every day. Have since moved to taking it in the evening after dinner. This works much better for me. My numbers are back within range, so no phlebotomy for the last two appointments, but still on the same milligrams. I’m still pretty fatigued, only a nap once in an awhile and I try to walk outside at least 20 minutes when I can. This whole thing definitely brings me down, but I rely on my faith to get me through. My next appointment is next week, so we will see where I’m at.
Replies to "I’m also thankful for this group! My very supportive husband found this for me. I was..."
Hello @csanjuan. Your husband gets an extra hug for telling you about Connect! ☺️ Welcome to the group. It’s always helpful to find you’re not alone with a diagnosis and have other people to talk to who are going through the same medical issues.
Looks like you have double the ‘fun’ with having both ET and PV. Both are treated similarly with HU so it’s good news to see your numbers are back within normal ranges and your rate of needed a phlebotomy has slowed down!
Having gone through a health issue myself, I know how this can tap into your daily life with a level of uncertainty. We’re never quite the same when we feel like our body let us down. It’s important to not dwell on ‘what ifs’, however. That thought process is an energy sapper and stress producer. Staying mentally positive is a key to survival. From what I’m reading, I think you’re handling this well with making sure you get daily exercise and grabbing a nap when needed. There’s no shame in napping because it’s important to listen to your body. If she wants to nap, then so be it! ☺️
You’re having blood work next week so best wishes for only good news there! Let me know what you find out, ok?
I take HU, 500 mg, 2x week, and I am fatigued. I just try to keep going with healthy eating and exercise. It works better for me to plan my appts in the afternoon. I'm 69, ET with Jak2, diagnosed Jan. 2023, but I've been taking baby aspirin for 30 years for "sticky" blood. I take daily baby aspirin and daily iron supplements. I am not anemic, but without iron, my blood work indicates low iron. I drink lots of water and green tea. I drink OJ with my iron. I gave up sodas and most processed food years ago. I am more of a vegetarian and don't eat red meat. I do have shellfish and chicken occasionally.
I recommend joining the free organization, the MPN Foundation. They have great information online and on YouTube. Many free online workshops with doctors and researchers in the MPN field.
Karla
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The fatigue is so real. I was just diagnosed in March 2023. Can't wait to go to bed at night. Can sleep go 12 hours if nothing to get up for