Results not so good

[Graham7694]

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

[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]

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]

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]

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]

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 in reply to Wyebird]

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 in reply to Graham7694]

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]

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

[Graham7694 in reply to Mardihel]

I was diagnosed with Primary Myelofibrosis 😩