platelets increasing despite increase of HU

[nightshadow]

Venting---, and some advice please

Female - age 65 ET Jak2

The last two tests have shown an increase in platelets. After the first test another 500 mg of HU was added to the weekly total bringing it to 5,000 for the week. Unfortunately, my platelets have increased even more than they had on the first test.

1st test 466 on 4500mgHU/wk

2nd test 398 on 5,000 mgHU/wk

3rd test 468 on 5,000 mgHU/wk

I am not sure the HU is working for me anymore and I am worried about taking anagrelide as one of the side effects is bleeding. Even though my platelets are low to have the problem of excessive bleeding, I tended to bleed a bit more than normal before treatment and today the nurse drawing my blood asked if I was on a blood thinner because we had a little bit of trouble stopping the bleeding from the needle prick, which hasn't been a problem since starting on HU

Also, my blood work is showing a potential for kidney disease.

So I am talking with my Hematologist today, and I am not sure if I should ask for a switch to an anagrelide or stay on the HU. I've been at 1,000mg/day and that didn't work well for me. On the other hand, I am not sure I want to have more issues with bleeding.

[Cat1001954]

my platelets increased so I was put on extra 5tablets in week and normal 1 tablet weekend so basically only extra2 per week and I went this week to consultant and my platelets have gone down to 356 in a space of 3 months

[Mostew]

I hope you had a good appointment

[nightshadow in reply to Mostew]

Nope, new provider, third visit and still not feeling like I trust her. I'm going to have to figure out how to get access to an MPN specialist, but I've moved away from a major metropolitan area to a primarily rural area, though I live in a good size town and it isn't easy from here.

[TLJ-1]

I hope your visit with the hematologist has calmed you and lead to a good plan. You do not state the time frame for the tests. However, the platelet counts you cite are all nearly the same for all three tests given the fluctuations in levels that readily and naturally occur. If 5000 mg HU/wk does not have especially bad side effects and the platelet level does not continue to increase, it seems you may have found a reasonable treatment for now. For those of us using anticoagulants, it is not unusual that we do not stop bleeding easily even with platelet levels much higher than yours.

[nightshadow in reply to TLJ-1]

Unfortunately, my meeting didn't go well from my perspective. I have moved since diagnosis and I am not happy with my new provider. I have never been on anticoagulants so that shouldn't be the reason. Though, come to think on it I had taken some aspirin a couple of days earlier, so that may have caused it.

[hunter5582]

Hope that your appointment went well. Depending on the your specific of case of ET, your current platelet levels may be fine. There is no linear relationship between platelet levels and risk of thrombosis. Some MPN Specialists use 600 as a target value. Some rely on the delta (degree of change) instead. Some do not use a numeric target for platelets at all.

There is a linear relationship between platelet levels and hemorrhage risk. The higher the PLTs the higher the risk of hemorrhage. While this tends to be neared 1,000 or more, it can happen at lower levels. For me, this would occur once I neared 800. Note that increase hemorrhage can occur at lower levels due to impaired PLT function or von Willebrand factor deficiency, Given that you have reported excessive bleeding, I would assume your hematologist order prothrombin times and possibly a von Willebrand panel.

Your report of potential CKD is concerning. It is worth noting that renal impairment is a known risk of HU. While CKD can occur for other reasons, in the context of 5,000mg HU/week, and adverse reaction would need to be considered.

Hopefully, you are already consulting with a MPN Specialist. It would make sense to review your treatment goals and all treatment options. Preventing hemorrhage can be just as important as preventing thrombosis. As my former MPN Specialist said to me "You really do not want to get a brain bleed." There are more treatment options than HU and anagrelide. This is something to review with a MPN Specialist who knows your case.

Wishing you success moving forward,

[nightshadow]

Thanks for the information, Hunter. Unfortunately I don't have an MPN specialist near me. Since my current hematologist soes video meetings only, I am considering seeing if I can contact my original doctor who is a specialist, but now lives across the country from me, and see if she is willing to continue my care via video meetings.