After 15 years of high platelets my platelets ha... - MPN Voice

MPN Voice

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After 15 years of high platelets my platelets have suddenly dropped into normal range

clubdino profile image
25 Replies

I'm not sure if this is a good thing or a bad thing. Of course the reason I think it may be bad is I'm wondering if this is the beginning of myelofibrosis. The rest of my blood work was completely normal. My platelets were 424,000. I'm not on meds for my ET.

On the other hand the only change I have made in my life that could explain a sudden drop in platelets is I started Cymbalta. The Cymbalta greatly reduced my pain and I used to have fevers four times a week and now I don't have fevers anymore. So I wonder could Cymbalta be putting my ET in remission?

Anybody with post ET/PV myelofibrosis can you tell me the first changes you noticed in your bloodwork. Were the changes fast or slow?

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clubdino profile image
clubdino
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25 Replies
Osteomyelio profile image
Osteomyelio

That is very interesting. I hope you are in remission

Charlieapple2018 profile image
Charlieapple2018

Remission would be amazing!

fee13 profile image
fee13

Supposedly MPN's are driven by inflammation, I wonder if there's something in it that minimises this. Very interesting.

clubdino profile image
clubdino in reply tofee13

Definitely. It will be interesting to see my platelet count after 6 months on the medication.

william-Indo profile image
william-Indo

Happy to hear your blood result

Keep update to us

Cja1956 profile image
Cja1956

I’ve never heard that before but maybe you’re on to something. I would probably do some research and talk to your doctor about it. If the fevers have stopped, that seems to me to be a very good sign, indeed.

Aneliv9 profile image
Aneliv9

Is cymbalta a drug for depression?Is so, what has to do with the blood counts?

clubdino profile image
clubdino in reply toAneliv9

It's an antidepressant that can be used for pain. It has nothing to do with blood counts.. but that doesn't mean it can't have an effect on your blood count.

Aneliv9 profile image
Aneliv9 in reply toclubdino

Ok.. everything is possible though!

Cymbalta is not an anti-inflammatory and only has an effect on the perception of pain. At what level have your platelets been since you were diagnosed? What tests were done at diagnosis or since to confirm the diagnosis - BMB, genetic tests (JAK2 etc)?

clubdino profile image
clubdino in reply to

I am CALR positive. I had a BM biopsy over a decade ago that didn't really show anything. My platelets never have gone over 550k the entire 15 years but they have also never been in the normal range either.

With a normal BMB and a platelet count that was never very high, it may be that, despite your CALR+ status, ET was not a correct diagnosis. However, now that your platelets are at normal levels, you need not worry too much about a cardiac episode or a stroke. Great news.

clubdino profile image
clubdino in reply to

So you think I may have had a false positive test?

Not for me to say. Just trying to make sense of your situation. If Cymbalta had been an anti-inflammatory, then your typically small reduction in platelets would make more sense from what we know at this time. Perhaps you have inadvertently stumbled on something not recognised before

Jschwab profile image
Jschwab

I'm hoping for remission for you too!

clubdino profile image
clubdino in reply toJschwab

Thanks!

MaggieSylvie profile image
MaggieSylvie

Platelets rise and fall every day.

clubdino profile image
clubdino in reply toMaggieSylvie

Lol yes I know...I am the one who read the blood smears on the chemo patients.

Jschwab profile image
Jschwab

How are your plate letters now?

clubdino profile image
clubdino in reply toJschwab

Hi. I haven't checked them in over six months but my last level returned to just above normal.

Jschwab profile image
Jschwab in reply toclubdino

So are you still at an elevated risk of stroke if the platelettes are in the normal range? Mine are, as you know, and the Haem is telling me to continue aspirin.... maybe as a precaution? I am just wondering if there's something that keeps us at a continued greater risk of stroke because we have the condition, even if platelette count is in normal ranges.

clubdino profile image
clubdino in reply toJschwab

I have read in the past that our platelets are still more likely to function abnormally even if they manage to dip in normal range. But I have to admit I am not very good about taking my aspirin on a regular basis. Also, not sure if you are Jak2 pos or CALR positive but I have also read that aspirin may not be necessary for CALR patients because we are at less risk. Not medical advice of course just something I remember reading.

clubdino profile image
clubdino in reply toJschwab

This paper explains more: hematologyandoncology.net/a...

Jschwab profile image
Jschwab in reply toclubdino

Thank you for this link!

Jschwab profile image
Jschwab

Platelettes

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