between a rock and a hard place. : I’m supposed to... - MPN Voice

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between a rock and a hard place.

Pounds11 profile image
8 Replies

I’m supposed to get my platelets down,according to my MPN specialist, below 400 before my hip surgery on 12/21. So had to take hydrea daily instead of 4x a week. Got first bloods today after upping dose. Platelets at 531 from 572 two weeks ago but MCV and MCH at top of range. 100 and 33. They’ve taken quite a jump. First listing of causes of this—hydroxyurea. I know this is only one test but looks like headed for macrocytic anemia. I take b12 and 800 mcg folic acid daily. Learned this on another forum, not from either of my blood docs.

How do I approach this to my MPN specialist? My orthopedic doc is not knowledgeable about my condition. Going a little crazy cuz this hip needs to be fixed so I can enjoy my life with my partner my garden my dogs. And I have to jump through all these other hoops before surgery like EKG, Dr appt, Covid test on and on worried I do all this and my blood work will wreck it all Do I go merrily on my way or what?

can anyone help me with a plan on this super forum? I’m worried the anemia is going to get worse and I’ve noticed my only symptom, tinnitus, is really loud all of a sudden. Thank you in advance for any suggestions. I have no other health issues. 77 years old, diagnosed in Jan 2022

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Pounds11
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8 Replies
EPguy profile image
EPguy

MCV and MCH do go up on HU I peaked at 117 and 42 in these values, well past what you have so far. It went down after I switched to Besremi. As Hunter has noted, it's a way to know the patient is taking the hydrea. My Dr did not worry about these values.

It doesn't mean this increase is never a concern, but it is normal and expected on HU and your MPN specialist should not be surprised.

Pounds11 profile image
Pounds11 in reply to EPguy

Thank you for this info. I guess I’ll just keep on until after the surgery when he says I can cut back to 4x a week.

mhos61 profile image
mhos61

Don’t be too concerned about the raised MCH/MCV. This is a normal response to hydrea. Everyone who takes hydrea will have this response, including myself.

Raise any concerns you have about this with your MPN Specialist who should be able to put your mind at rest.

The most important thing is to get your platelets down to 400 or less, so you can have the hip surgery without any unnecessary complications. If you’re not happy taking one tablet daily you can always revert to four a week when you’re fully recovered from surgery.

Pounds11 profile image
Pounds11 in reply to mhos61

thank you all! I so appreciate this forum. how do I find past information on concerns on this site? People have alluded to that.

hunter5582 profile image
hunter5582

Macrocytosis is a normal response to HU. That is why docs use it to monitor patient compliance with treatment. Definitely discuss it with your MPN Specialist but you will find the doc is not concerned. Wishing you success with the upcoming hip surgery.

saltmarsh profile image
saltmarsh

I had a similar challenge with knee replacement surgery. Surgeon wanted platelets down to 350. Three months before surgery my doctor doubled dosage to 500mg hydroxyurea twice a day. Platelets did drop. The problem I had was that I became anemic after the surgery - I'm assuming blood loss during surgery never really rebounded. Also, I was taken off the hydrea after the surgery and took iron pills. My platelets went back up to 590 and my doctor has stopped the phlebotomies for now and I'm back to taking 500mg/day hydroxyurea. I occasionally take an iron pill if I feel I need it although the numbers don't suggest it's necessary. It is a bit of a roller coaster ride so be your best advocate with the doctors. By way of background, I'm 75, fairly active and pv started 3 years ago

Phantasia profile image
Phantasia

I had surgery back in 2017 while my platelets were in the 550 to 600 range and I was only on aspirin.My surgeon put me on an anticoagulant which I had to inject daily for 3 weeks afterwards. I continued to take my aspirin.

I had no issues during my recovery period.

I was on 3500mg then 4500mg of Hydroxyurea pw for 7 months and my platelets only decreased to 567. I have now discontinued it as it wasn't working.

Can you ask about injecting an anticoagulant like I did following surgery if it's a blood clot they're concerned about?

The other difference is I was 56 when I had my surgery.

I hope it all works out.

Ggrana3192 profile image
Ggrana3192

I had my gallbladder removed two years ago with my platelets at 900k and didn’t have a problem . But I was 50 years old and my doctor said it wouldn’t be a problem . I was monitored for a few hours after that and sent home

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