Results not so good: Had my Haemo appointment this... - MPN Voice

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Results not so good

Graham7694 profile image
9 Replies

Had my Haemo appointment this morning. My platelets have been coming down and 2 months ago were down to 707 so was hoping for good things today. Sadly they have now gone up to 840 😩 he said to continue with the Rux for 2 more months and if they were at the same or higher then would add something alongside

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Graham7694 profile image
Graham7694
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9 Replies
WileyFrench profile image
WileyFrench

I sympathize and empathize. I take 1 hydroxy per day for ET and my platelets has nicely dropped from 670 to 558. Now, about a month later they’re up to 583. Medication the same. I wonder why platelets do that - jump around. Anyone else have this happen, and then do they also go down again? I certainly understand it bumming you out, Graham.

Aime profile image
Aime

Hi Graham, sorry to hear your results are not what you wanted. It is so annoying mainly I find because I can’t do anything to control. Every sympathy, you are not alone. Kindest regards Aime xx😾

Rachelthepotter profile image
Rachelthepotter

Dear Graham

I’m so sorry the rux may not be doing its job as effectively as it was , but I'm glad that you have a haemo who can add another drug if needed. Hope all goes well. I have PMF and I’m on rux too, so I have a personal interest in what else might be needed in the future.

Stevesmum42 profile image
Stevesmum42

Hi Graham. Oh the dissapointed when this happens , I know just how you feel. Probably just a blip for you as the platelets do go up and down, maybe you have had an infection . Let's hope on your next cbc they have come down again.

Best wishes Sandy

Wyebird profile image
Wyebird

Yes it’s all to familiar with me.

You must be extremely worried.

With me it’s been ,add an extra tablet a week they go down. 2 visits later and they’ve gone back up. Only by approximately 50 to roughly 450. It’s still disheartening though. I’m now on 7 anagrelide a week in addition to my 17 hydroxicarbomide.

Graham7694 profile image
Graham7694 in reply toWyebird

Thank you all for your kind words 😀 I am less grumpy today. I guess you just expect them to keep coming down and it may well be a glitch. I have had lower back pain for the last 3 weeks and that may well account for it - who knows with this blooming disease

Mufftreacs profile image
Mufftreacs in reply toGraham7694

Hi Graham,

I have had fluctuating platelets from the beginning, 12 years ago.

3 months ago, I was on 21 HU capsules per week. I flew to the UK from Australia and my platelets shot up, having been stable for 6 months previously. I am now on 24 capsules a week. (A high dose)

Hopefully, they will come down, so will the medication.

I know how frightening it is but after 12 years, I know they do seem to fluctuate for no reason.

Best wishes

Kate

I

Mardihel profile image
Mardihel

Oh that's not good, were you diagnosed with ET,? must admit not heard of that drug.

Graham7694 profile image
Graham7694 in reply toMardihel

I was diagnosed with Primary Myelofibrosis 😩

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