What vitamins to avoid when taking Hydrea (hydroxyurea) for ET JAK2?

Changing the subject completely (apologies), is anyone dealing with aching fingers, joints and bones, making normal activities very challenging? Sometimes quite painful and worse in the morning. I am a crocheter who had not crocheted for a number of years, but picked it up again 10 months after my diagnosis with ET. The pain began before I started crocheting again but I don't like being constrained - I'm admittedly stubborn...
I am 80 years old and was diagnosed with ET JAK2+ in the fall of 2024 after a hospitalization for multiple pulmonary embolisms in each lobe of my lungs. I have been on HU 500mg M-W-F since December, 2024. It rapidly reduced my platelet count. I hover just below 400. Oncologist wants me between 350 and 400 to keep platelets at bay without compromising my red and white counts.
This pain is nothing I've ever dealt with before so I'm curious if this is from the ET or perhaps the HU, though my dosage is low in comparison to many of you.

@ebertolis
I am interested in your Biotin comment. Why was it suggested to not take?
Thank you, Eileen

@ksyren

I am so sorry for what you're experiencing.

Time isn't kind to our skeletons. Paradoxically, if I can make myself move, I feel better.

Any chance you can find a (heated!) pool just to splash around in?

I wouldn't say ET or HU has made my achey joints worse, but we are all different!

Hope others will add their thoughts.

Hi,@eileen11108

I've read in medical texts on the web that if one has chronic kidney disease, he can't get rid of Biotin well. This can cause it to build up in the body. As according to my eGFR (59 g/L) I have a kidney insuffiency grade 3a, I would not take this vitamin.
Best regards, Eva

@ebertolis
Hi Eva,
Thank you for the information. I am 81. I have been taking Hydroxyurea since 2022 for ET JAK2 and my hair is getting very thin. I asked my hematologist if I could take Biotin for hair loss and she was okay with it.

I am kidney stage 3B so I will stop taking it now and research the subject. My next labs are March 2 so I will check my Bun/Creatinine/eGFR.

Best wishes, Eileen

I have not been total diagnosed yet. See my hematologist 3-5-26. I have a normal spleen size after being tested, had a bone marrow biopsy 3 days ago, and last CBC showed my platelets at 492 dropping from 699. I’ve been on hydroxyurea 500mg for 20 days. I take this capsule once every morning. I have tested positive for JAK2. I have elevated red and white blood cells. Tested negative for lymphoma and negative for cancer in my blood. I’m anxious to hear what my doctor found in my bone marrow biopsy. I did not realize how sensitive to the sun hydroxyurea makes me u til being about 5 minutes in the sun today. Does anyone use a great sunscreen. If so the name please. I would really appreciate it. Denise

@djlom15

A dermatologist told me mineral-based sunscreens are the most effective. An SPF hat is great too.

Congratulations on bringing down your platelet count! Wishing you a helpful visit with your hematologist.

Hi. Your case sounds similar to mine. I was diagnosed 3 years ago. I take 500mg of HU 4x week, and my oncologist is happy with my numbers around 530K, since the rest of the blood work looks good. I also need iron supplements and a sodium supplement to balance my electrolytes. HU makes us highly susceptible to skin cancers, so avoid the sun. I purchased sun-protective clothing and hats, and I wear sunglasses at all times when outside. I avoid going out until after 4 PM. I also have Hashimoto's thyroid, and the heat bothers me. Eat healthy, try to do some exercise, hydrate with lots of water, and avoid processed foods. I also drink green tea and have given up all sodas. We can live with this for a long time, but we have to aim for a healthy lifestyle and diet. I take vitamins per my doctor's approval, including Vit C, D3, B12, Biotin (some hair loss with HU), calcium with magnesium, multivitamin, and Tumeric. I also take Claritin for the itching. My skin and feet are extremely dry. I use Cerave cream for both. I also soak my feet and use a pumice stone to soften the feet so the Cerave cream will penetrate. I am 72 and doing well. I do have a lot of fatigue, so I alternate days going out. I have a full life with family, friends, volunteering, and my hobbies. Wishing you the best!

Hi, so nice to read all your thoughtful tips and comments. I’m 79 and was a personal trainer. I still do strength training 3 days and a week and have a Pilates reformer here in my home. It is such a nice piece of equipment for core and basically full body workouts. Hopefully I will never have to give up my active life style. I have started my journey with my hematologist only one month ago. So far I feel great and I so want that feeling to continue. This all came forward in a regular blood test from my internist. I’m anxious for my doctor to report to me how my bone marrow biopsy came out. Thank you once more for your thoughtful comments, Denise L

@djlom15 cerave has great lotion 50 spf and a purse sized stick with zinc. No oily feel. Amazon has perfect lightweight SPF 50 crew neck long sleeve shirts. @$20.