Hydroxyurea vs Agrilyn: Anyone switched from HU to Agrilyn?

I am 73 and was on Agralyn for about 17 years. I am type 2 diabetic. I had no side affects with Agralyn. Wish I was still on it. My specialist changed, so have been on HU since Jan, this year. Very tired all the time, have several side effects, but they could be diabetic related. Got both at same time. Apparently you should be on HU before Agralyn. Good luck with your journey.

jp - As an FYI - as the more I read in these (and other) posts everybody has a bit different journey and as long as you really trust your doc, at least listen, but also it is good to get 2nd opinion from an MPN specialist. Your experience with HU sounds similar - I was on it for 4-5 years with varying results going up and down. Stopped taking when it really disrupted all my blood values (RBC, PLT, WBC, etc) in a 30 day period (while not overweight I also lost 30 lbs that was not all bad). I was switched to Jakafi and overall have at least kept my PLT values in check. Still see some of the symptoms progressing; although some may just be normal aging (although I hate to admit that). Good luck with your journey.

@lynnebgraham Thank you.

@drbart86 Thank you. HU drove my RBC down dramatically below normal. WBC was mostly below normal

Hello there
I am also Cal R - type 2
I was on HU for 15+ years and develop very bad skin cancers. I switched Hems when mine wanted to put me on Errivedge. (Side effects seemed horrible) and I refused
New Hem started me on Anagrelide 5 years ago and doing just fine with it. .05 three x day. It actually works better for lowering my platelets than HU.
I understand Anagrelide is not for anyone with heart issue's. So far all good. Just need to check in with cardiologist every 6 months.
I am 68.

Thanks. This is good feedback especially since your situation mirrors mine. It would be great to be able to see my Hemo every 6 months. This year I’ve been seeing her on average every 4 weeks due to my platelets count being all over the map.

I’ve never heard of Errivedge.

I was diagnosed with ET in 1992 and was on HU for 3 years. He switched me to Agyrelin (sp) and took that for another couple of years. Counts were perfect and I decided I didn’t want to take anything. Counts were fine for over 20 years, and not on any meds. In June 2025, after 5 years of STRESS (Oxidative Stress) and Microbiome issues for 3 years was diagnosed with MF. Still not on meds, but now have many symptoms going on. I feel blessed that for so many years I lived my life not thinking of being ill. I am 75 years of age.

Hi @riveramaya2009,
I totally appreciate your sharing your situation and what you thought was best to do. I first learned I had ET in January 2025 at age 65 which my O/H changed to Primary Myelofibrosis in February 2025 when I asked for a bone marrow biopsy to confirm that not knowing what would probably be happen from that request. I learned I have CALR1 mutation then also. It is possible I had high platelets for a while as I do not remember any doctor testing them for me. Once years ago when I was in college, I was told my labs were “off “ for my liver. I had labs done again once I had a good job with medical insurance which tested me and said all was normal. I did not give it any thought again as I became very busy with my special needs daughter and work. I took her regularly for routine labs as she needs them done for low thyroid issues to be able to continue on levothyroxine for compensated hypothyroidism. She is very high functioning and went to regular school graduating with her diploma and continuing to college. I became her college note taker as she needs that and what offered was not helpful. She is only four units away from her AA for transfer to any CA State University but will need support there too. I do enjoy the experience of learning along with her everything currently known which still leaves so much that is admitted to be unknown which I appreciate. I suspect much of MPNs are what a patient expects they are. I have no symptoms now and lead what I consider a very healthy lifestyle with healthy eating, adequate sleep, great exercise daily thanks to my daughter, family support of good husband and sister , and no health issues such as hypertension or diabetes or previous health issues, so I would prefer to live my life feeling blessed until God decides something should change. I would much prefer living my life until your age of 75 feeling fine and blessed. I would much prefer to have about ten good years for myself as I researched and learned the that average live expectancy post stem cell transplant for myelofibrosis is 40 to 70% for living another five years after it. I also researched and found that having high platelets helps prolong survival for those with CALR1 mutation so I see no reason for me to take any medication that will lower all my blood counts as only all offered to me do. I have had CT scan showing I have no enlarged spleen so that is more support for my decision. I prefer to follow in your footsteps of choosing not to feel ill as long as possible.
By the way, what are are you current symptoms if you do not feel uncomfortable sharing them? What are your mutations and how are your blood labs? Do you have any low counts on blood labs such as platelet and white cell counts as well as hemoglobin?
Thank you for sharing and have a blessed new week ahead.

@jp2000 Errivedge is for advanced Basel cell carcinoma not for ET. I ended up using an immunotherapy cream for 6 months instead of this very powerful (and expensive) drug and that eradicated my skin cancer! so glad I listened to my gut.
There is a lot of ‘woe is me’ on this site in regards to having ET because a few years ago some organization attached the word cancer to it. That word freaks everyone with ET out. When I was diagnosed in 1999 it was called a blood disorder. Attitude is everything when it comes to your health issues.
I’m still here and healthy after a diagnosis almost 30 years ago. We all have our individual health journey filled with highs and lows

Btw I have bloodwork every 3 months so I am monitored remotely throughout the year via Telemedicine.
I realized I am one of the more fortunate ones with this diagnosis- just want to shine a positive light for those with this ‘disorder’ 😊

@nancyra Thanks for the feedback. I also don’t like using the term cancer for ET. It’s important to stay positive no matter what health situation you are encountering.