New to Hydrea for ET

Hi nohrt4me,
Thank you for posting. White Coat Syndrome just means I get really high BP (in my case systolic but fine diastolic) when I see doctors, but have completely normal BP at home. I take my BP at home morning and evening to make sure it is fine and it has been. I have an appointment with a new primary doctor on 3/14 who I am assured will not cancel on me like my first one with Kaiser did four times, even before I had aberrant lab work! I can ask my O/H what you suggested. I did not know that early on MPN researchers looked at all CALR mutation patients as PMF. Honestly, I do not think she has experience treating either ET or PMF and that she did not appreciate me asking any questions. If I truly have PMF, her Hydrea regimen would not be appropriate so I am not in any rush to take it. I really did not know how hard it is for docs to tell if one has ET or PMF. Is it really that difficult?
Yes, my O/H doesn’t think my swollen non painful right ring finger has anything to do with my labs. I have an appointment with her med school classmate on March 26 who she referred me to because he is a great hand specialist she said. It might actually be better for me to be referred to someone she doesn’t know to get a more unbiased opinion just on my finger in hindsight. I have already been to an outside of Kaiser hand surgeon who did a MRI and said she did not know what I have and would just do surgery to figure it out then which sounded really strange to me. So my experience with docs really has not been helpful at all. I really would like to address my finger first and will I make sure to bring that up to my new primary doc when I go in two weeks.

Thank you for sharing that and it is encouraging. I’ll find out my reaction to the drug when I start next week. I hope it’s as positive as what it was for your wife.

I don't know what current thinking about CALR is. It was discovered as an MPN driver mutation so recently that the landscape changes faster than I can track it. It may be that there's something else that makes yr doc think you are PMF, and getting him to articulate that would be good. Fingers crossed for your next visit.

You certainly have the right to prioritize your medical issues and treatments. I try to follow advice most of the time, but I have told my GP that my bad back and aging teeth have more effect on my daily quality of life than my heart or blood problems. When your back gives out or your filling comes loose, it's hard to care about stuff that doesn' t hurt.

But docs respond to what they can see, which is generally not pain or discomfort. Except for my dentist. God bless her, she believes me when I say my tooth hurts, and she doesn't mess around.

Hi again nohrt4me,
Thanks again for posting. It was so nice to have someone just listen to my concerns. Honestly, I think just because I asked if a bone marrow biopsy might be helpful to determine what I have is the reason my female O/H who seems not very experienced in MPNs reassessed what she thought I have and came up with PMF. Since I redid my lab work yesterday after about three weeks and had such different now normal results on many of the tests she ordered perhaps she is as confused as I am. Now the labs she ordered show I can take baby aspirin as my VonWillebrand tests she ran are all normal. Prior she had told me not to take it although the standing order she has at the pharmacy is for me to take it. I have never taken the aspirin or anything else because she sent message to me saying not to take aspirin. I really do not like the many non in person and not even a phone call for directions and thoughts on my case from docs at Kaiser. There are just so many discrepancies in my situation and I have done nothing differently, just living my active positive life here with my daughter and family. Yes, I am now 65 and realize that comes with supposed sickness issues which I have never had and do not care to if they do not exist. My big question now is why are so many things in my case returning to normal on so many labs when I have done absolutely nothing differently than I was doing before? Honestly. I am thankful to God for that and will continue to persist in my healthy lifestyle keeping myself very busy most every minute of the day and sleeping well each night because of keeping very busy I feel. Yes, I do still have elevated platelets and white blood cells but not at level initially determined for some strange reason. Yes, I still have my non painful very enlarged right hand ring finger proximal (closer to my knuckle) joint original unaddressed successfully as my chief complaint. I did have a young female rheumatologist at Kaiser flat out tell me she did not know what I have and said sometimes “docs never know but treat what it might be”. At least she was honest and since I have no pain she could understand why I declined treatment of my joint issue with a steroid she offered. Once again, I am thankful to God I have no pain and have never had in any of my joints. I think I asked for bone marrow biopsy because I do have two really swollen non painful joints and thought maybe that could help identify their cause, but it did not.
I am glad your good dentist listened to you, especially when you truly have something that is hurting. Oddly enough, at the dental clinic is the only place I do not have elevated BP readings and my hygienist actually was surprised to hear my BP has ever been a concern at doctor visits.
Thanks for letting me vent and teaching me a few things too.
Stay positive!

Sorry for your recent health issues but you are seriously risking a stroke or heart attack with your platelets elevated that much. The meds aren’t bad after they get the dosage right and your body adjusts. They’ve been out since the 1960’s so that should reassure you some. It’s your life and you sound like you take good care of yourself but ex Eric’s r and good diet will NOT lower your platelets. Do some research on reputable sites. Good luck.

ET is a diagnosis thrown at patients who exhibit high consistent high platelet counts. You don’t mention if you’ve been tested for the JAK-2 gene mutation, one of several underlying causes of high platelets. I also question your stated suggested HU dosage of 500 mg TID. Seems like an excessive initial dosage. Usually, the dosage starts at 500 mg/ day, with bi-monthly labs to monitor your blood values.
I started at the above dosage regimen after being diagnosed with ET, and a corresponding lab test indicating I indeed had the JAK-2 gene mutation. After several weeks at the 500mg/day dosage , my platelet count dropped from 986 to 350. My Hemo/Onc reduced my dose to 500mg/day, 4 times a week and I’m holding at the 350 platelet count.
There are many drivers for a high a platelet count. Clearly, you need to find more evidence as to why yours is so high other than the CALR you mention.

Hmm, I think @1pearl mentioned that her platelet levels are dropping without meds and that she is CALR+, not JAK2.

So, if I'm reading this right, I get why she is hinky about taking HU with platelets that are dropping spontaneously. If you have the CALR mutation, ET, PMF, and MF are sometimes hard to differentiate, and she has asked for a BMB, which seems like a very prudent step to clear up that mystery and to ensure HU is the best med.

Taking baby aspirin is what keeps the clots and strokes at bay. She's neg for vonWillebrand's Syndrome and has been cleared to take baby ASA. If she takes the ASA, that should help curb clot risk until she sees a doc who can give her a clear diagnosis.

And getting a diagnosis can take a long time: My platelet levels were first taken seriously in March 2014 after a cardiology procedure. After doing monthly CBCs for awhile to establish that platelets were going up, GP sent me to hemo in August. I tested neg for JAK2, and she ordered a bone marrow in late Sept. Insurance would not pay for MPL and CALR tests because they were too new, but hemo suspected CALR. I got the BMB results and diagnosis in early Nov and was put on ASA. Following year I got the CALR test and it was positive. Because CALRs don't clot as often as JAK2's and I had no spleen enlargement, doc allowed platelets to run about 800 before starting HU in 2018. By that time, I was really feeling the fatigue, and HU perked me up and, by 2019, kept my platelets in 400s.

Hi nypara66,

Thank you for your concern. Yes, I know exercise will not lower my platelets, but it is very helpful for lowing my stress levels with my recent health issues. I am aware that Hydrea has been around a long time and it is cytotoxic to cells killing off not just platelets, but red and white cells among others too. My February 2 lab showed I had low red cells so Hydrea would not be helpful for that. My February 27 lab showed my red cells had returned to strong normal level and all the while I have taken no meds. So yes, Hydrea is helpful in some cases but not all, especially if diagnosis is not clear which in my case is not clear. In your case, it sounds perfect for you which is great.
Thanks again for sharing.

Interesting that your platelet increase was identified after a cardiology procedure. If I may ask, what was the procedure, and were any blood transfusions involved.
If you’ve read my previous posts, my platelet issue manifested itself shortly after triple bypass surgery and the administration of several units of blood. My prior (pre-surgery) blood value history was unremarkable.
No physician, and I’ve spoken to many, can confirm or deny whether or not my ET / JAK-2 issue is result of a blood transfusion. In any event, it is what it is and I have to deal with it.

I have been on Hydrea for 2 1/2 years. Platelets were 1100 now down to 465 where my doc is happy. I take 1000mg every day and yes my hair is thinning. I'm 76 years old so don't know if it's the drug or old age. I'm also interested in what others have to say about it too. Thanks for sharing