Effectiveness of HU on ET w/MPL?

When I started HU in Aug of last year, my platlet count was over 800. I was started on one 500mg HU per day, then increased to 2/day after my second blood test showed improvement, but still higher than desired. In a month my count was under 400 and I felt stable. After a recent hospitalization I was told I should try a different med. I think there are many different experiences with HU.

@ednels Thanks for the feedback. Was there a reason given for trying a different med? Also, was your hospitalization connected to either ET or HU? Thanks.

One Dr thought it was due to ET, a second Dr thought HU. Am being referred to third Dr at Hershey Medical center. Many interactions so it's hard to pinpoint cause.

@ednels Good luck in your pursuit of the right answers. A day at a time.

I t was me 500 mg HU 7 days a week. My platelets fell from around 700,000 to around 550,000. That took 4 months. My numbers bounce around but are largely below 600,000. My doctor thinks that is ok. My bodily symptoms have increased and my platelet counts are no longer increasing. Each person’s response can be different. I would give it mitre time if you are tolerating it ok

Hello, johnnychips. With MPL-driven ET, we are the rarest of the rare, representing only 3-5% of all people with ET.

Alas, this means we are the least studied and least understood. On the up side, we are somewhat less prone to blood clots than those with the JAK driver.

On the down side, that MPL driver is really tough to rein in.

While on this forum you'll read about others whose counts came down within weeks -- that's not the MPL way.

My count was never astronomical, just in the 600 and 700s. But stubborn!! After I started HU (admittedly, at a nice low dose which is the absolute best way to begin), my count actually went up.

It took almost two years with slowly increasing dosage to get my count into the high normal range. I've been taking fifteen 500mg capsules a week for about a year now.

Thanks to my oncologist's careful titration, I have no significant issues with that much HU.

Hang in there! I hope your experience will be like mine: relief from the symptoms of HU, reduction in platelet count, shoring up of your bone marrow against progression.

Please let us know how you're doing.

@eloise999 Good feedback. Thanks!

@janemc Thanks for sharing your experience fellow ET w/MPL. It seems that I need to be more patient and give the process more time. At least the platelet count is moving in the right direction. Thankfully, at least so far, I have had no noticeable side effects from HU other than some occasional fatigue (which is unclear as to whether it is due to ET or HU) and increased photosensitivity on my skin. The latter has become an annoyance as I enjoy the sun and particularly with the upcoming summer it seems I need to be extra careful with sun exposure. Some people counsel using 50 SPF and 70 SPF sunscreen protection + wearing a hat + covering as much skin as possible. That is going to be quite challenging as we're heading down the shore for a month, and hanging around the pool, beach and bike riding...I can use some advice on the level of caution I need to take without being unnecessarily paranoid about it.

I wear a hat outside. I also use spf 50 sunscreen. I also have sun shirts which are lightweight and let me cover up in hot weather. If you have already had skin cancer, I would probably be even more careful, for example avoiding long sun exposure at the middle of the day.

@johnnychips I see some typos in my response. My symptoms are decreasing.