What are pros of hydroxyurea vs other methods of lowering platelets?

Your platelet level must be fairly low if starting HU is being left up to you. I'm not aware of other methods to lower platelet counts but will be watching this post to see if anyone has any good ideas! I have the JAK2 mutation also, and my highest platelet level was 692. Because I'm 69 I'm considered "high risk" so started HU as soon as the bone marrow biopsy came back negative for everything else. I've been fortunate in that I have not had any discernable side effects and after about two months on HU, my platelet level is down to 172! Good luck on your journey!

Some years ago, I was having trouble with sciatica and sleep and wanted to get off pills for those issues. I tried CBD oil produced by a licensed pharmacist and third-party tested for a month. It was $50 for a month's supply. Insurance did not cover it. I took the dose recommended by the maker.

My platelets stayed the same. The sciatica and sleep did not improve. But I did develop some horrendous acid reflux. I have never had anything like that with HU. Acid reflux went away when I stopped the CBD.

My guess is that the CBD was useless, and the oil it was compounded with was the acid reflux culprit.

First and last time I tried being my own guinea pig. Results were scary and the cost was expensive.

What did work for sleep and sciatica was physical therapy and yoga. I have done short chair yoga routines daily for the last four years, and it has made a huge difference in mobility and pain levels. No longer on pills for that.

If you "don't react well" to most prescription meds, you might want to try to get to the bottom of that. If you have an MPN, you will need prescription meds eventually.

Take care.

Thank you for the response. My issues with meds are allergies. I'm a redhead & according to my doctor, gingers tend to be sensitive to meds & pain medication. So far, it has all followed true. My ginger son has the same issues but my other 2 nonginger kids have no issues. I plan to discuss it with my hematologist. Since I am considered low risk I may consider trying it & see what my levels are with my next labs.

I'm 47 so I think it has more to do with my age & the fact that I have never had an issue with clotting & all of my other gene testing came back normal. My highest was around 750 but my last labs were down to around 615 with only being on low dose Aspirin. My doctor said it would fluctuate.

I'm a redhead too . . . have been taking HU for 3 months (500mg 3 times a week) without any problems.

Per advice given here, I take it after the evening meal, always with at least 8 ounces of water.

Reviewing your situation with your hematologist is a great idea.

@cdurbin, have you heard of pharmacogenetics? It's a test, sometimes called drug-gene testing or PxG for short, that can test how you specifically metabolize medications. There are several discussions about it here in the community of how it has helped people find medications that work for them and avoid those that they cannot metabolize:
https://connect.mayoclinic.org/search/?search=pharmacogenetics
Here's an article from Mayo Clinic that explains more clearly and thoroughly than I can.
- Mayo Clinic Q and A: What is pharmacogenomics? https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-what-is-pharmacogenomics/
- Pharmacogenomics in Patient Care https://www.mayo.edu/research/centers-programs/center-individualized-medicine/patient-care/pharmacogenomics

I have not, I'll definitely check into it! I have a whole list of medications & contrasts that I have had allergic reactions.

I started my journey when my Family Dr. had a CBC done as part of my Annual Physical. The test showed that my Platelets were in the mid 600 range. He referred me to the Cancer Center for further testing. The Hematologist said I had ET and started me on Anagrelide. My Platelets started falling immediately but so did everything else, down, down, down went all the numbers, and at a fast pace too. He had me taking large amounts of Iron by mouth. That kept me with an upset stomach all the time. After a while I was not satisfied with my treatment and switched to a new Dr. that had just arrived from the Mayo Clinic. At our first meeting, he saw that I was taking Anagrelide and told me to stop. He also told me to stop the Iron tablets. He then had me wait for one month to clear completely out of my system. Then he started me on hydroxyurea and gave me Iron via infusion. He also discovered that I had high levels of Lead and he started me on Chelation infusions to get the Lead out of my blood and bone. After moving to hydroxyurea my CBC counts leveled off and stopped declining. My Platelets were at a good level but the RBC, HGB were much too low. I continued taking Hydroxyurea and things remained stable, but low. He then added Procrit to the menu to stimulate my Kidneys to get my RBC production back up. The Procrit was eventually changed out for Aranesp. After a time the Hydroxyurea was dropped, Procrit injections continued, Blood counts came up to an acceptable level and stabilized. This lasted for several years before things started down once again. At that point it was determined that things had moved from ET to MF & MDS. I have always felt that the Anagrelide was what started the downward movement of things, and that it was the Hydroxyurea that stabilized things. Right or Wrong all I know is that things stopped declining when I switched to Hydroxyurea, and they held for a long time. Who knows!

My diagnosis of ET with Jak2 Mutation came after high platelets, 780K, were found on a CBC at my annual physical. I was referred to a hematologist, not realizing that I was also going to an oncologist too. That was a shock. I had no symptoms other than high platelets. My oncologist recommended 500 mg of hydroxy (HU) 3x a week. I was not ready to start until I did my research. As a result of my reading, month one was 2 baby aspirin and oral iron supplements. In month 2, some improvement in platelets, but we added 500 mg of HU once 1x week and went back to 1 baby aspirin due to bleeding and bruising. Month 3 showed a slight increase in platelets, so we went with 500 mg. of HU, 2x week, one baby aspirin, and one iron supplement daily. I have been on this same regimen for 10 months. All numbers look good and platelets are stable at 500. I did not want aggressive treatment if HU worked. It does give me fatigue, dry skin, dry eyes, and bleeding gums, but all are manageable. Most of the time, I plan my activities for the afternoon due to the fatigue. Fortunately, I am retired and can adjust my schedule as needed. HU reduced immunity. I wear my mask in large groups, shopping, and while out of my house to stay well. So far, it's worked. I am also up to date on all immunizations. I have not had COVID, flu, RSV, or pneumonia. It does help to be careful, but I still see family and friends. Take care!

I have had ET, JAK2 positive, for 12 years. Received no treatment until 20 months ago when I had serious pulmonary embolisms and platelets went to 800,000. Now take 500 mg of HU daily and xarelto. Platelets now in low 200,000 with very minimal side effects. I almost waited too late to start treatment.