1. < Blood Cancers & Disorders

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

Posted by eddb @eddb, Oct 1, 2023

I was diagnosed with having a blood cancer that looks and acts a lot like Polycythemia Vera (PV) about 6 years ago. I’ve been rolling along ok with (mostly monthly) phlebotomies, until a year or so ago. At that point my white blood cells and (most importantly) my platelet levels started to increase. The doc did a 2nd bone marrow extraction but I STILL tested negative for PV. After a CT scan and other tests were done to rule out any possible hidden bodily infections, my doc prescribed Hydrea 500 MG. I filled the script about a week and a half ago…and it is still sitting in a bag on my counter, unopened. I got seriously freaked out when I researched the drug and found all those nasty side effects associated with the drug.

Now, I’m sitting here knowing that my platelet count as of 3 days ago was 987 (over twice the normal level limit) and that I could throw a blood clot at anytime. I was holding off taking the drug, to get an appointment with a hematologist/oncologist for a 2nd opinion, but that appointment isn’t for another 10 days - I’m a nervous wreck! I do not want to take the chance with hydrea but I don’t want to clot. I don’t even have a real diagnosis other than suspicion of bone marrow cancer or the beginning stages of it….

I’d be curious to hear about what others have experienced while on this drug. Much appreciated!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

licketysplit | @licketysplit | Oct 15, 2023

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

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1 reply
jonisuealan | @jonisuealan | Oct 15, 2023
In reply to @eileen11108 "You could try Anagrelide. It reduces platelets. If it is iexpensive on your insurance check Goodrx.com...." + (show)
@eileen11108

You could try Anagrelide. It reduces platelets. If it is iexpensive on your insurance check Goodrx.com. You can get it fir about $48.00 a month at pharmacies. My doctor even has flyers on this at his office. When you check for price click down to see price at different locations, Then print the coupon.
Best wishes, Eileen

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Thank you!!

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treeore | @treeore | Oct 15, 2023
In reply to @jonisuealan "I’ve been on 1500 mg of hydrea daily for over 3 decades with minimal side effects..." + (show)
@jonisuealan

I’ve been on 1500 mg of hydrea daily for over 3 decades with minimal side effects and a stable platelet count for ET. Diagnosed when I was 20 and I just turned 56! I’m active and overall fairly healthy (except have strep throat now). I tend to pick up everything with this poor immune system… Anyway My doctor wants to switch me to interferon as he says hydrea for that long is not good. However my insurance doesn’t cover much of it. Monthly amount out of pocket is $2500, who can afford that. I’m not sure what to do. Looking for any suggestions. Thanks!!!

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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.)

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1 reply
jonisuealan | @jonisuealan | Oct 15, 2023
In reply to @treeore "Joni, do look into financial aide from the interferon producer itself. I could not justify the..." + (show)
@treeore

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.)

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

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Mentor
Lori, Volunteer Mentor | @loribmt | Oct 15, 2023
In reply to @licketysplit "Newly diagnosed with Chronic Lymphatic Leukemia, How careful do I have to be about infection? Do..." + (show)
@licketysplit

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

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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?

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ontheverge | @ontheverge | Oct 16, 2023
In reply to @cblowers1 "Interesting to me that your hair has gotten curly on hydrea. My hair, which has always..." + (show)
@cblowers1

Interesting to me that your hair has gotten curly on hydrea. My hair, which has always been very straight, has gotten wavy and curly in the last couple of years. I am in my 70s. I have taken 1000mg hydrea daily since September of 2019 and suspected that was the cause of the change, but had never read of it being a side effect or of anyone having this happen!

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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.

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nypara66 | @nypara66 | Oct 16, 2023
In reply to @cblowers1 "Interesting to me that your hair has gotten curly on hydrea. My hair, which has always..." + (show)
@cblowers1

Interesting to me that your hair has gotten curly on hydrea. My hair, which has always been very straight, has gotten wavy and curly in the last couple of years. I am in my 70s. I have taken 1000mg hydrea daily since September of 2019 and suspected that was the cause of the change, but had never read of it being a side effect or of anyone having this happen!

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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!

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robinll | @robinll | Oct 16, 2023

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.

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vmg44 | @vmg44 | Oct 16, 2023

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

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1995victoria | @1995victoria | Oct 17, 2023

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.

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