Idiopathic erythrocytosis confirmed

[Aime]

Hi Guys, just been at haem. My jak Xeon test was also negative so my haem thinks I have idiopathic erythrocytosis which means I'm still producing too many red cells and will still need blood tests every 8 weeks and venesection as before. My last haem should really have done the second gene test but at least I've got a straight answer now, although it's not conclusive as to why I'm making too many red blood cells. Hope you are all as well as you can be. Kindest regards Aime xx😺😺

[Hidden]

Hi Aime,

I’m pleased you have got an answer at last, but I’m still slightly confused. Will they ever be able to find out the cause of it or is it just something you will live with? I’m asking because I’ve got my first appointment with an haematologist next week. I was hoping for definite answers but somehow I don’t think they can always give a reason as to why red blood/ haemoglobin/ etc bloods are high.

Elaine 🌹

[Aime in reply to Hidden]

Hi, thank you for replying. Yes unfortunately idiopathic just means they don't have a reason as yet for my high red cell count so the only treatment they can offer at the moment is blood tests every 8 weeks plus venesection at .45 hematocrit and above. There is apparently less chance of this.mutating to leukaemia but a greater chance of changing to pv or mutating to hodgkins. But it's the first time I've felt confidence about what I'm being told. My symptoms are the same as someone with primary pv but this has been ruled out by two negative jak2 and jak2 Xeon mutations. I know it leaves me not much further on but I'm confident in this particular haems diagnosis. Hope that helps you a little bit.xx kindest regards Aime 😺😺

[piggie50]

Hi Aime, I’m so pleased you have got a diagnosis now. I suppose the treatment for now is no different than you have had the last 5 years? Do you know what this means for you going forward ?

Very best wishes

Judy xx

[Aime in reply to piggie50]

Hi Judy, you'll see my long winded answer above. Thank you and I hope you're well. Kindest regards Aime xx😺😺

[Poppy6060]

Hi Aime good you got your results did heam say this could be the reason you get a lot of bone pain it’s a lot for you to take in hope you ok keep well best wishes Poppy

[Aime in reply to Poppy6060]

Hi Poppy, thank you for posting. He doesn't think.my bone/joint issues are due to my condition so away to tackle a painful hip now which has left me with very little sleep the last few nights. Kindest regards Aime xx 😺😺

[EleanorPV]

Hi Aime, thanks for your update, glad you got your results. Does this explain your other symptoms? Sending ehugs.

[Aime in reply to EleanorPV]

Hi Eleanor thank you for E hugs and post. No it doesn't explain my bone and joint pain so that's the next thing on the agenda. Kindest regards Aime xx 😺😺

[S031251]

Hi Aime

Pleased to hear you have a confirmed prognosis at least that’s some comfort.

You have my best wishes and hope Haems can manage it all better for you now

Anna x

[Aime in reply to S031251]

Thank you. AIME XX😺😺

[Bridie123]

Hi Aime, pleased to hear nothing extra nasty has turned up,

Regards Carole xxx

[Aime in reply to Bridie123]

Thank you Bridie. Kindest regards Aime xx 😺😺

[Mazcd Partner MPNVoice]

Hi Aime, well at least you know, and can move forward now, but do stay on this forum, you are one of us now. Good luck with sorting out the hip pain. Maz x x

[Aime]

Thank you Maz.xx😺😺

[Stevesmum42]

Hi Aime. So glad at last you have a diagnosis but more importantly a Heamo you have faith in. Sorry to hear of your bad hip pain, hope that can be relieved for you, we so need our sleep and rest.

Please stay with us on here , you are a rock, so empathetic and kind.

Thank you for letting us know the diagnosis.

All the best to you. Love Sandy X

[Aime]

Hi Sandy thank you so much for your very kind reply. I don't feel I'm a rock I feel I'm always moaning about something else. Hope you're as good as you can be. Kindest regards Aime xx 😺😺

[amhann]

Hi Aime, so glad you have a (sort of) answer (even if the powers that be don’t know why) - more important is that you have a haem that you can be confident in - keep pushing for investigation for your joint pain (I know it can be exhausting to keep chipping at them, but hopefully your new haem will be listening + acting)

Very best wishes going forward. Anne-Marie xxx

[Aime in reply to amhann]

Thank you Anne Marie. I seem to be moaning about something. My gp takes it in his stride and puts up with me but some people I just answer "I'm fine," because I know they r saying - there's always something wrong with her." I agree with them but I wish there wasnt!! I know I'm lucky compared with lots and will be giving myself a good kick up the backside when I get home.xx thank you for listening to my rant.xx kindest regards Aime😺😺

[mhos61]

Good news that they tested for the other gene mutation, at least that part is now conclusive.

Wishing you all the best.

Mary x 😺

[Aime in reply to mhos61]

Thank you Mary, hope you are keeping as well as you can be. Kindest regards Aime xx 😺😺

[Inca]

Hello Aime,

What a time you have had,I suppose at least you have a sort of answer.

My red cells refuse to come down but platelets and whites are rock bottom.

Been taken off Hydrea and blood tested now every week,in a month I will have a B M B ....what are they going to find????? We seem to be always in waiting for some result or other,

Pleased for you ,hope you get the hip pain sorted,I have ice packs on mine often...So many friends have had replacements but we have all ridden horses in freezing cold weather and rain,not everyone tho ,it's the price we pay for being on two legs!

Best to you Aime + your 4legged Aime,keep her wrapped around you,so soothing ,a cat on the lap.e hugs and keep well as poss .Sally

[Aime in reply to Inca]

Thanks Sally. Will give Aime a cuddle from you. Hope you get sorted and get your answers. Every sympathy, not nice waiting but so often the answer seems to be - we don't really know - but as long as they keep monitoring closely I'm happy. Kindest regards and E hugs Aime xx😺😺

[Inca in reply to Aime]

So is it still an MP N ,Aime? Been thinking about you and the diagnosis,not going to try to spell it!!! There must be so much we do not comprehend....I am 3weeks off Hydrea now,Platelets gone up ,below normal but better than 20......all other counts Nr normal....but I have not an ounce of energy feel dreadful and dozy! Spending a lot of time thinking and worrying...hope you are feeling ok now.....wish we had proper answers.Best to both Aimes.xxx Sally.

[Aime in reply to Inca]

Hi Sally, as far as I understand (I might be wrong) it’s not an MPN. Sorry to hear you’re having a rotten time. My idiopathic erythrocytosis isn’t bad just now but I’ve had two emergency appointments with gp due to severe hip and leg pain and temperature. Temperature coming down, on stronger, slow release painkillers and waiting on an X-ray. I just can’t believe it, it’s like all the pains and bugs are lining up, waiting to take their turn! Sorry I’m just feeling sorry for myself but I should be grateful for my haem diagnosis.

Hope you feel better soon, kind regards and E hugs Aime x😺😺😺

[Inca in reply to Aime]

O M G,you are describing me......I have never experienced such pain

before with the P V,except for headaches,my legs,hips arms legs don't belong to me,shivers too..I did blame the flu vac ,but it's gone on too long.Normally I push on but simply cannot..like you I am thinking 'what bug next'.Last week nurse said it was low platelets to blame ,but they have gone up.I have to give in and go to Dr after Monday blood test...scared to go ,as here they do not mess about and anything odd I am in hospital,I really do not want that just now.

So I commiserate with you ,living on Paracetamol,I am depressed too,it's not just you,do you have some heat gel pads?I am using them instead of ice packs,more relief with this pain.I really hope yours abates and X rays are not another problem,I just feel like crying like a baby!Hope you are stronger,sending e hugs ,pain relieving vibes ,

Sally

[Aime in reply to Inca]

Oh Sally, so sorry to hear you are so sore and miserable. Totally understand and sending hugs and never ending E hugs. I’ve not been in as much pain since prior to my knee replacement op. My knee went downhill fast and I’m beginning to wonder if my hip has done the same. I’ve got more blood tests on Tuesday and gp put urgent on X-ray so hoping it’s soon. I’ve been up crying a couple of nights with the pain, that’s after taking maximum paracetamol and tramadol. However the slow release tramadol, backed up by regular paracetamol seems to be helping.

I have stopped telling some people how I’m feeling because I think they’re finding it hard to believe I’m in so much pain, especially so soon after getting my foot and heel sorted. Heat seems to be helping me too, ice made things worse. My temperature seems to be stabilising now but still getting odd sweats and yucky feelings.

I know you don’t want to end up in hospital but if it means you get sorted out properly, it’s probably the best way. Let me know how you are getting on - as many times as you need to! Every wish and vibe is sent for you to be well again ASAP. Thinking about you, E hugs, 💐 and anything else that helps. Kindest regards Aime xx😻😻

[Aime in reply to Inca]

Meant to say once the grandkids are away tomorrow, I’ll get Aime to cuddle up to me, she’s sooooo warm.xx😻😻😻😻

[lizzziep]

At least you do have some sort of answer, just sending you virtual hugs and good wishes

Lizzie xx

[Aime in reply to lizzziep]

Thank you so much Lizzie. Kindest regards Aime xx 😺😺