Anyone else find the side effects of Hydrea 500MG frightening?

Newly diagnosed with Chronic Lymphatic Leukemia, How careful do I have to be about infection? Do people use mask and gloves?

Thank you!!

Joni, do look into financial aide from the interferon producer itself. I could not justify the enormous expense of Besremi as it would quickly gouge out my retirement savings. Even Medicare with plan D would be a dreadful cost though maybe this will change as the IRA rules start to take affect for Medicare drug plans in the next few years.) I applied and have at least been approved for the first three months. (They've implied I have to do some other application in January, which I dread.) The application process looked easy at first but actually was filled with frustrating pauses and roadblocks. It took months to adequately meet all the requirements of the body that makes the decision. Still, what an enormous help free treatment is. (During the process I suggested they do more of a prorated discount, which seems more fair, but the pharmaceutical rep said no, it's all or nothing financial aide.)

Thanks for the info! I will look into that! Take care, Joni

Welcome to Connect @licketysplit. Chronic Lymphatic Leukemia or CLL is generally a slowly developing blood condition and you may not have symptoms for many years. However it is a type of cancer that attacks white blood cells, affecting your body’s ability to fight off infection. So it is always a good idea to take extra precautions to avoid exposure to illnesses, especially Covid, RSV, and the flu.

If you haven’t already it’s a really good idea to make sure your vaccinations are up to date.
I’m immunocompromised and always wear a mask when I’m in stores or areas where there are groups of people, in elevators, theaters, etc. Avoidance of exposure and frequent hand washing/hand sanitizers are really important.

Here are some links from trusted sources for you to read up on CLL. Knowledge is power but the sources can matter. Avoiding Dr Google is probably the best advice. ☺️

~CLL Can Leave You Immunocompromised. Here’s How to Manage
https://www.healthline.com/health/cll/cll-immunocompromised

~This is comprehensive guide to CLL from:
Verywellhealth.com
https://www.verywellhealth.com/chronic-lymphocytic-leukemia-7551732

~Living with CLL from Cllcancer.com
https://www.cllcancer.com/living-with-cll?segid=clldxpre1li&cid=ppc_ppd_cll_dsa_bing_01026&&msclkid=11a10aad0c1a1283b4aa6f8130ee9a9e&gclid=11a10aad0c1a1283b4aa6f8130ee9a9e&gclsrc=3p.ds

Were you having symptoms that led to your diagnosis or was this discovered with a routine exam? Has your doctor discussion treatment options or are you in an active surveillance stage?

My once straight hair has been getting noticeably curlier over the past two years though I didn't start HU until late April this year. I wonder if it's actually a side-effect of ET which was diagnosed after high platelets on annual labwork in December.

Hello I had issues with hair thinning on Hydroxyurea. I think that possibly hair growing back in is courser and appears curly? Just a thought. I originally took 500mg daily and saw an immediate difference in my hair. Currently taking 3X a day and my hair issues have resolved. Hang in there guys, we got this!

Yes, I was diagnosed with PV in 1/2020 but held off taking Hydroxyuria for 2.5 years until my PLT count was up to 2057! I started on 1 pill daily for a year and about 3 months ago started taking 10 pills a week. Now my PLT count is slightly over 700, whew! I was totally freaked out by what was said about this drug, you cannot even touch it with your bare hands but I've actually had no bad side effects and the fatigue I was experiencing has subsided. As to your fear of blood clots, find out about natural blood thinners, Ginkgo, Turmeric, Grape seed oil/pills, garlic, ginger, etc. But if holistic doesn't help, take the pill, it's better than sudden death.

When given the diagnosis of PV and receiving the news that I will be on Hydroxyurea I was also taken aback. After speaking with my sister-in-law who is a pharmacist I was ready set go to follow my doctors orders. The first pill I took really was noticeable but I also had a bit of the jitters. It has now been one year and taking this med has improved my life. As I continued the medicine after several months I very rarely notice a headache. I know we all have different body chemistries and reactions. Hydroxyurea was first approved by the US FDA in 1967 I feel comfortable with the knowledge that many lives have been improved and I look forward to ongoing research to find cures for all blood disorders. Every day is a blessing and trying to focus on the goodness in the world is my necessary part in feeling good.
Best to you,
Virginia

I've been on HU for 3 years, first year was biggest adjustment. But I'd rather take HU then get a stroke or heart attack.