Essential Thrombocythemia: Looking for information and support

I'm taking 1500mg of HU daily along and 325mg aspirin. I'm 74, have ET Jak2. My last platelet count was 630. Anyone else taking this much HU and aspirin?

What are the issues as me even taking HU 500 daily and ecosprin 75 mg for past 8 months but all these body has accepted & adjusted . Was keen to know what side effects you observing and what’s your age

Can you tell us what dose you take and what the suspected problems with HU are?

I have been taking HU for 9 years w/o a problem until recently. I have developed several health issues that may have been caused by the meds.

I don't know the answer to that and will definitely ask my hemo at my appt next week. Thanks for your comments.

Just curious about why you can't have knee injections (cortisone?) until your platelets were stable. I have scoliosis and can foresee a time when I need shots at some point, so would be grateful to have more info.

Hope your hemo will communicate with your ortho about this.

I find that the ET itself isn't a big deal except for the fatigue, but it complicates all your other ailments.

I have no pain or anything else with Hydrea, 500 mg daily. My platelets were 800,000 now in low 400s. I am JAK2 positive.

Was diagnosed with ET and JAK2 positive. Have been taking Hydrea 500mg and 81mg baby aspirin - both daily. In general, have good days and bad days something pretty normal when you are in your 70s. At times I do feel extra nauseous. My additional challenge is that I was scheduled to have Total Knee replacement in February which was cancelled due to ET and I cannot get injections until platelets are stable. My platelet level has been in the 500s for about 2 years. In January, I started bruising in my legs and my PCP referred me to my hematologist. I started Hydrea in March (with platelet level of 633) and after 2 weeks it went down to 486 and 2 weeks after that it went up to 531. After reading all the posts...this variation is to be expected. Last night I had such severe burning type pain from my hips down to knees ... feeling better after taking Celebrex. But I really, minimally need a knee injection. I am seeing my Hematologist next week and will discuss my concern. Has anyone felt the pain I described? - it may have just been my osteoarthritis.

I got some of those paper pill/souffle cups to pour the HU into. Don't have to touch it that way. I don't put them in the pill pack with my other meds. I put dried kidney beans in the pill pack as placeholders so I remember which days to take one or two HU pills. Been four years and I haven't inadvertently swallowed the beans yet, knock wood!

I just rinse with water. I have very rare mouth sores, but dabbing milk of magnesia on them with a swab takes the sting out. They never last long.

I swish my mouth with Colloidal Silver, then rinse. I also use the 'miracle mouth wash' intermittently.