Hi, I’ve never had an ultrasound to check my spleen size. I’ve had ET for 17 years. I started seeing an MPN specialist a few years ago. He checks my spleen size by having me lay on my back and he palpates my abdomen. I do not have an enlarged spleen.

It is my understanding that once a patient’s counts are stable, a visit for labs every three months is common. Then again, everyone is different. I’ve gone more frequently at times, especially with medication changes. But have never gone longer between appointments and blood draws. The labs usually consist of the CBC, complete blood count, and an CMP, complete metabolic panel.

Hope you are doing well.
Janet

Janet dear you have been through a lot. Hope the new medicine works great for you. Wish you all the best. Lots of hugs and kisses from me

Hi, I had to stop taking hydrea after about ten years. I was having nausea and bone pain and hurt all over. I then took anagrelide. I experienced a weird side effect, which is listed on the medication info. It caused me to loose my balance. It was strange to have to hold onto to the walls while walking through my house in the morning. I would not take the morning dose until I did what I needed or wanted to do in the morning. My local hemo dufmt believe me. The symptom stopped once I stopped taking the anagrelide. I was an jakafi just fur a couple months (this was also when I was taking anagrelide). The jakafi was not good for me because it lowered my red blood cells and hemoglobin. These counts have always been right at the low end of the normal range, unfortunately. My platelets being the only high count. Then I tried pegasys and had bad side effects within 8 weeks. I continued on a low and less frequent dose just to keep my platelets below 1.2 million. I have permanent damage from the Pegasys.🙁 Soooo, 🙄🙂, this is why I'm on the clinical trial medicine, Bomedemstat. I had run out of options. I've been doing much better now.

Yes, my high platelet count was found when I had an annual check up. I was referred to a hematologist and over a couple months and a few CBCs, my platelets rose from about 600,000 to 930,000. At that point BMB results were complete and I was diagnosed and started Hydrea right away.

And you have been on hydra ever since?
Also was it only the platelets that were not normal? I mean what about the rest of blood counts, were they within normal range? Did you ever take Anagrelide?