I’ve just come back from seeing my new haematologist. I’d been feeling more than usually tired and easily upset, and had had a recurrencece of bone pain in my arns, and had had the dreaded pruritis for the first time last night. And the fuzzy head and memory lapses were bothersome, too. I was also gettng lots of mast cell type symptoms - inflammed face lips
To my ( and his)surprise, my blood counts were good, and my JAK2 allele burden was very low. I hadn’t been able to get information about my allele burden from my previous consultant, and as I had grade 2 bone fibrosis, and had a DIPSS score of Inter -2 I’d have assumed it was significant. My first reaction was to feel like a fraud - how could I feel so rotten with such good blood counts and light JAK2 burden? But I did.
So, the EPO has been switched to one that I only need to inject every 4 weeks rather than weekly , and ‘I’ve been given an antihistamine that might help with the inflamatory symptoms. Alas, my Hg at 11.6 was too high for me to have a transfusion- the only thing that actually makes me feel my old self for a while..
It might be possible to estimate what my original allele burden was from my original BMB to see whether its always been low, or whether it has gone down since being on rux. Next time I see him I’ll know.
Knowing that I’ve got reasonable Hg levels makes me feel that it’d be worth while aiming to get more exercise in. its not so hot and humid now, which will help
I feel quite cheered up.
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Rachelthepotter
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It’s a bit of a rollercoaster isn’t it? Up when we’re down, down when we’re up and everything in between. I do find myself regarding that initial enquiry from the Haem ‘So how are you feeling?’ as something of a trick question! But so pleased you are feeling positive. A yes, what a relief to be enjoying some cooling breezes. Although, I’m already done with rain and grey skies .......! Keep Well.
I’ve just looked at your other posts on this site because I was intrigued by your reference to bone pain in your arms. I innocently went to see my GP to report pain in my upper arms in November last year. Following numerous blood tests, I was diagnosed with PV in February this year. The arm pains have been getting slightly worse but none of the haematologists has been able to suggest a cause. X-rays were taken on a GP’s suggestion, but with no result. Two tests for polymyalgia have also been negative. The pain is mainly noticeable on raising my arms but is sometimes there with no movement.
Have you been given any indication as to what is causing your arm pain?
Thank you for your posts and your thoughtful, positive attitude. I empathise with what you report about fatigue, fuzzy head and forgetfulness!
The bone pains are, I’ve been told, caused by pressure from changes in the bone marrow. They come and go, but get worse with anything that stresses the bone ( the leverage from digging with hand tools to plant things in the garden, for example). Not joint pains, but aches in the middle of the bones. When I started EPO, which stimulates the bone marrow to produce more red blood cells, they got worse for a bit. Very characteristic of myelofibrosis.
Have you had a bone marrow biopsy? That would show if you had bone marrow fibrosis as a potential cause of your bone pain. There is a patient forum planned in London in November at Guy’s. Maz is organisng it. Might be worth coming to to ask the experts who will be giving talks .
I was diagnosed without a BMB and I've mused on the possible benefits of having one done. I'll raise the issue at my consultation which is next week with the nurse.
Rachel, glad to hear that your feeling cheerful with your latest results.
It’s confusing though how your troublesome symptoms and your blood counts and ‘allele burden’ don’t tally? This just goes to show the complexity of understanding MPNs. Even your haematologist sounds perplexed! This has to be beneficial though, even if you don’t feel the physical effects.
Thanks, Mary. My understanding is that the allele burden is the proportion of copies of the JAK2 gene that are the overactive mutated version , and no one is sure exactly what the clinical significance is. But fewer rubbish copies must be a good thing, you’d think. I’ll be interested to know what the estimate of the previous level was.
Sorry you are having a struggle at the moment... I have a bit of news that I will post about shortly, however, I was curious... How long has it been since your last BMB?
Hi Steve. I had a bmb when I was diagnosed in Nov/ Dec 2016. No need for another, I’m told, unless clinical decisions deoend on it. Might be interesting now, tho.
Unfortnately I was seen on Thursday at the very end of late running clinic, so no real time to talk. But no rush. I ‘ll have a chance to talk things over at my next apt.
Sorry to see you are struggling a bit at the moment. I’m sure CBC is not the whole story when it comes to how we feel. These diseases are still not fully understood and I sometimes feel rough when my blood would say otherwise. My blood has been relatively stable apart from Hgb for quite some time - disastrously low but stable! Maybe the exercise will help and as you say the cooler weather should make that easier
Good to hear you feel cheered up Rachel, I found the hot weather effected me too, plus my fall did not help, my joints are really quite painful at the moment, but have tried to step up my exercise which seems to of helped, plus this cooler weather, even though I do love the sun these last few weeks have been so,so hot.
Can I ask what is an Allele burden, never heard of it, I am quite ignorant of these technical terms 🤪 but glad that you are cheered.
Hi Jean. The allele burden is proportion of over - productive , nasty mutated JAK2 and normal ( charmingly called wild type) in the cells that make your blood. No one is sure yet if a higher allele burden is necessarily a bad thing. But it seems likely.
Guys wouldn't do the tests to work mine out last year when I asked, ?cost ? but the Churchill in Oxford did it routinely. Maybe costs have come down.
You certainly have had a rough time of it, and I'm sorry that you have had pruritus in addition to everything else! It is strange the relationship between blood counts and symptoms, I wonder if anyone will ever sort that one out! It does seem that some people can have alarming sounding counts, and feel splendidly fine, whilst others are feeling dreadful and the blood result is hardly out of whack! It is almost like it does it just to make for maximum difficulty when dealing with people in long white coats! Glad that your allele burden is low, that must good news really, and it would be interesting to see if Rux has helped with that. Anyway, love from us here in NZ, and hope that the slightly cooler weather makes things better for you.
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