query on previous meds before realising/dx with ET and how long?

[Grendall]

Hi all,

I have just watched the latest MPN seminar (which I always fine very interesting and informative)

There is always a Q&A but it did raise a question for me:

My very first symptom was that of constant 24/7 headaches back in October 2021 my high platelet count had been noted at this point but the special test to confirm my ET Calr was in process and confirmed in November 2021

I remember asking my GP if this could be related after doing a little research on Dr Google, this was instantly shut down from the GP!

Long story short, and after a CT scan (all clear) it was put down to a form of migraine (ok fine) but was put on slow release beta blocker Propanalol of which I am still taking today. Now I have got correct DX and over the last 10months or so with other symptoms developing quite quickly and actually starting on IFN, my query is:

should I still actually be taking a ‘beta blocker’ for these headaches? And how long have I had the MPN with the details I have listed

1) looking back at my blood results back to 2018 is when my platelets started being outside the range but nothing done about it, and then back to 2016 always being on the border of high >450

2) I have had high blood pressure for some years and been on BP meds for a few years now

3) Also on HRT for about 5 years

QUESTION PLEASE: Does this mean I have had this mutation since at least 2018 when my platelets started being above range? Although back then no questions raised or no specific mutation test carried out!

Only asking with the findings being what they call (10 year median range) for the condition!

Appreciate any feedback please….confused 🤔

[Jw59]

jac.2 her e diagnosed about anyear ago no headaches but high platelet and white mine too always just over for year atleat 5or 6 was enimic i.n 2016 had rectum carcinoid tumor removed

[Ayla13]

Hi Grendall,

My platelets started being high at 460 in 2015 ( regular yearly blood work) . No one was concerned. They kept rising at every yearly exam and I was told that it sometimes happens for various reasons and not to worry too much . Well during 2019 yearly exam my platelets finally hit 980 and that’s when we started investigations with ultrasound of my torso . Found out I had kidney cancer ( a small tumor I had removed in 2020) . This was thought to be the reason for my high platelets until a half year after my surgery , my platelets climbed to 1. 4 million . So that’s when I was sent to hematologist/ oncologist and given a bone marrow biopsy and blood work to determine mutation . I am 64 yrs old , I am CALR1 positive, am taking HU ( 1000 mg daily ) and my platelets are now at 440 . So yes your mutation has been with you ever since your platelets were out of normal range , you just got diagnosed later . I also had some headaches but my symptoms were mostly dizziness and restless ( hot feet ). HU has minimized these symptoms especially the dizziness. No headaches apart from regular once in a while . Maybe discuss if you can have meds adjusted and see how your symptoms are ? Maybe there are other reasons why you need to continue beta blockers ? But get a specialist involved. A GP might not have all the detailed answers for our condition . Best of luck 🤞

[Grendall in reply to Ayla13]

thank you Ayla13

I very much appreciate your feedback. It is weird finding out that we probably had this mutation a few years prior isn’t it? GP’s just always brushing it off…

Regarding the beta blockers they were given literally for my headaches. I did change GP surgery’s in January and the previous GP offered me Anitriptiline for the headaches but I didn’t suit them and they are an antidepressant so didn’t like it either.

I will speak to the Heam doc on my next appointment now I am on on IFN injections, I have no idea at this stage until I came off the beta blockers as to whether the headaches would come back (I get mild ones now) through the symptoms but it’s manageable…I hope you are well now and moving forward? Keep safe and well x

[hunter5582]

Sorry to hear about the brush off from the GP. Unfortunately this is all to common when dealing with MPNs. There is significant ignorance about MPNs and how they present. One of the ways that MPNs present is with headaches. This is typically a microvascular issue. It has to do with how the blood cells behave, not the total number per se, That is not to say that you could not experience migraine as a separate cooccurring issue however. This is why a proper assessment for the issue is so important. What you are describing is beyond the scope of practice of a GP. A proper assessment would be by a neurologist who specializes in migraine and a hematologist who speciazes in MPNs working collaboratively.

The good news is that for migraine there are now multiple types of medications that may be more effective and less risk than beta blockers or amitriptyline. There is another class of medications called triptans than some people find very helpful. The newest class of migraine medications are the CGRP inhibitors. These medication are very effective and have a superior side effect profile to the other migraine meds. CGRP inhibitors come in two forms, monthly injectable or daily (or breakthrough) tablets. I have used a CGRP inhibitor (Ubrelvy) to control a different type of migraine. It works very well and has had no side effects at all.

If the ET is the cause of the headaches, then you may find relief with aspirin but may need a higher dose. You may also benefit from cytoreductive treatment which can reduce this symptom. This is something to review with a MPN Specialist. mpnforum.com/list-hem./

To answer you question, yes it is likely that you acquired the CALR mutation some time ago, possibly before you became symptomatic. This is quite common for people with MPNs. MPNs are rare disorders that often go undiagnosed until the proper assessment is done.

Wishing you success moving forward,