How often should platelets be checked ?

[Lainy1]

Hi everyone, I was just wondering how often my hematologist should be taking bloods to monitor my platelets ? Last one was 1124

Thanks for help lainy

[AndyT]

Hi Lainy - all depends on age, other blood counts and additional risk factors. Mine are generally done every 3 months but at times they have been done monthly. If you're consistently over 1,000 and or seeing counts rising quite fast I'd prefer to have them checked at least monthly. I've been on monthly checks since Christmas due to some raised LFT results but got signed off today for 3 months as all is looking ok again 😀

[Lainy1 in reply to AndyT]

Thanks for reply. That's good you have some good news. Thanks for reply 😊

[Helpatlast]

Hello yes like Andy says the average tends to be 3 months with lore often if its rising or your med dosage is changed - i have been on HU for 10 years and for a long time once settled on that i had three month checks but the last couple of years i have been 6 weeks all the time as my dose is forever changing with flucuating results on various blood counts - so it is individual - best to discuss with your consultant to see their views on what is good for you. All the best

[Lainy1 in reply to Helpatlast]

Thanks for reply. Will ask hematologist how often he thinks I should have them checked. ☺

[Lainy1 in reply to Helpatlast]

Hi thanks for reply and advice. I've bn on asprin for about 3 weeks now. Feel worse now I'm taking that. Missed it one day accidentally and felt better. Mm strange ?

Doc gave me omeprazol for stomach.

Best wishes lainy

[socrates_8]

Hey Lainy...

For some time now my medical team has insisted that my bloods be done every 2 weeks as they were also rising quite rapidly for a while there...

They do now seem to be settling down and I am hoping that means that I shall return to every 4-6 weeks...

As others might have suggested above, we can all vary a tad depending upon our conditions and the stage that we are at in that progression, if that makes any sense?

I was just viewing the Patient Power film on: Complete blood counts (CBCs) are, and what some of the vernacular endeavours to describe.

This question you have asked, was also mentioned there, and the response provided by the specialist was that bloods that are stable should be checked every four (4) weeks.

As also mentioned above Lainy, much depends upon the many other incidentals that pervade our MPN conditions: age, whether or not the patient has ever suffered from a TIA (minor stroke) or not, what the trending of your personal CBCs are suggesting about your condition and your required treatment, what stage of the journey we are at, and possibly whatever other complications (other disorders) that we might also be experiencing at the same time...

... In other words, there is usually a great deal to consider, and that is why it's usually best to be guided by your specialist ...

But I hope that some of this might help a little...

Steve

(Sydney)

[Lainy1 in reply to socrates_8]

Hi steve

What were your platelets at when you were getting bloods done every two weeks ? Mine are 1124 but hem did not look to bothered. I've to take asprin 75mg daily.

Fingers crossed that your blood is settling down and you get 4-6 weekly checks 🤗

I have looked at patient power thank you, I find that and other peoples posts reassuring.

4 weeks ago I thought I was reasonably healthy apart from sore tailbone and wanting to sleep 14 hrs s day after doing three 12.5 hr shifts. Nightshift is a killer and takes me weeks to recover from.

Never had TIA, PE or DVT non smoker. Drink hardly ever and just under the big 50 🙄 I guess that's why I'm only on asprin.

Await BMB on easter Monday 😭 hope results come back quickly as I'm not very patient.

Will take all advice given thank you. It's the uncertainty that is horrible.

Best wishes lainy

[Hidden]

Hi Lainy

I have had ET for two years now, and I have my platelets checked every 6 months, next blood test due in May! I wait with interest. last count 660! I am only on Aspirin mind you, because if you are any other medication you need closer monitoring.

Lyn

[Lainy1 in reply to Hidden]

Hi and thanks for reply.

How long did it take you to come to terms/accept this terrible disease ?

I just can't get it out of my head. It's only been a few weeks since my diagnosis.

Best wishes lainy

[heathermc]

Hi Lainey.

I have ET and only on asprin. I'm checked every 3 to 4 months and my platelets are rising . They were 1100 in January. I'm due a check up next week. It's part of my life now so hopefully they haven't risen.

started this journey 3 years ago now at that point they were around 600 mark. I'm 53 and been told I'm. low risk.

Fingers crossed they've gone down. Got a yoga classes the day before

take care

[socrates_8]

Morning Lainy from sunny Sydney...

It's beautiful here this AM

For a while, when I started taking Jakafi, my Blood Platelets (BPs) just kept rising rather quickly from 693 - 945.

I am a tad your senior at 57, and I have also had one TIA (August 2015), and that was why they classified me as 'high-risk', for a thrombotic event recurring etc...

Yes, we are all just a little different with our conditions, and that is why we must record our statistics and reply upon the medical fraternity for the best advice...

Your shift work position sounds tough. I was studying at university for a new career when first diagnosed. Two (2) days before I was due to be posted to an o/s position, my standard medical revealed my condition, and has altered my reality somewhat. I am still ever hopeful that I might be reaccepted once my condition has stabilised, hopefully sooner rather than later...

I have recently recommenced study mode, and I hope to return to complete a Masters... but I really do not handle stress very well at all, so I am just trying to take it all slowly for the moment.

My level of fatigue, continues to improve, and if it continues to do so, I shall reapply... But I am also trying to get too carried away with the notion for the present...

Have an excellent day Lainy

Steve

[Lainy1 in reply to socrates_8]

Good morning steve from sunny tenerife.

Yes I'm on my holidays but unlike you I only have 3 days of sunshine left 😣

When your platelets were almost 1 million did you have any symptoms ? I get flashing vision then brain fog to follow.

I'm sorry to hear you had a TIA a couple of years ago. Did it leave you with a weakness or anything ?

I'm worried that will happen to me. Fingers crossed it won't.

That's such a shame you were diagnosed just 2 days before posting with new career.

I asked my GP if I should be going on this holiday and her reply was "God yes, life goes on" so hopefully you will return and do that masters when you are ready. I'm sure you will find a way to manage the stress that comes with studying.

I get a lot of pleasure out of my job. But now I'm the patient and finding it rather difficult being on the other side for a change.

Have a nice day on the other side of the world.

Take care lainy

[socrates_8 in reply to Lainy1]

Morning Lainy...

Tenerife sounds lovely, at least you still have a few more warmer days before returning home to the UK.

In Sydney, we are just heading in to autumn & we are now enjoying the last few warm days before our winter months return...

I do not much like the cold. I really feel it in my bones. I have great trepidation concerning how cold this winter might prove to be... (I'm also considering moving back up north to sunnier Queensland).

When I was first diagnosed, my Blood Platelets (BPs) were 1.7M. There were many symptoms that I had long grown accustomed to, (that I now know today), were/are symptoms of my MPN condition: hot & cold sweats; bone & joint pain; extreme fatigue; extreme nausea; excruciating pains in my hands & fingers (burning sensations); inability to deal w/ stress, which later developed into hypertension (largely gone now - the hypertension); osteophyte growth over my lower spine (that at times can cause unbearable pain)

The monocular-vision, and lights in my eyes/vision, were I believe, an earlier symptom (maybe even a warning) prior to my having a TIA (minor stroke).

(I remember asking an optician if wearing glasses would correct that problem - I didn't require reading glasses prior to my TIA)

The TIA, only lasted circa 1-2 minutes. At first, there was a rising ringing sound in my left ear. That rose to a crescendo that became quite disturbing & unbearable. As it climaxed, I soundly realised that I had lost my ability for speech, and there was a paralysis in my right arm. It all very gradually returned, and fortunately for me no real lasting effects. I do however, have some problems now with my memory, that did not exist prior to that TIA event.

Almost unbelievably, this TIA event was misdiagnosed, and written off as one-off event, that may have been caused by a pinch nerve...

All my test results after the TIA were amazingly negative... (however, due to my poor vein structures, no bloods were taken at that time).

(I can remember the sensation of being mentally aware of not having any control over my faculty for speech & paralysis, and of being trapped inside my body)

The brain fog you mentioned, happened for me when I started HU, and then later Interferon. I found that symptom in particular, perhaps the most disturbing, as I was aware that I was stuck in some altered, chemically-induced reality, and found it extremely depressing at times.

Thankfully, for me, most of that fog lifted when I commenced taking the Ruxolitinib (Jakafi).

Yes, while it was a great shame learning of my MPN prior to embarking on a new field of interest (career), I guess that I should also be grateful that it was picked up before, and that as a result have not as yet suffered from any further stroke events. Events, that might have otherwise left me permanently incapacitated w/ both mental and physical consequences...

Still... after almost 5 years of continual study, I was greatly depressed by these events initially.

Lainy, I also noted above that you might have been having some stomach problems...?

Are the (low-dose) aspirin you are taking 'enteric-coated?'

Aspirin can harm the lining of our stomachs and cause other complications. Hence, enteric coating helps to prevent that problem...

Have an amazing day

Steve