ET JAK2 on Pegasys and Clopidogrel

[JackLina]

I'm concerned because my platelet level has dropped to normal range from 4 weeks of taking pegasys but my haeme still only sees me 7 weeks with no comment on the state of my other blood cells. I have been having big problems kicking my fatigue aside and getting on with things, which is my usual way of working. Could this be because my white cells are low. I am never given my full blood results even after I asked, so cannot see for myself. Just worried I should be lowering the weekly 45mcg dose? Penelope

[Tico]

Hi penelope,u should have been more insistent,if u still concerned,phone u specialist nurse & convey your worries about this,she will be able to give u full blood results over phone. I calling my specialist nurse in the morning after i had too rush away from my haemo appointment on wednesday due to an emergency with my daughter,only had time to have my blood taken,i will phone tomorrow to get my full results because i've also been experiencing more fatigue recently.please let me know how you get on. Atb to you.🤗tina.

[JackLina in reply to Tico]

Thank you for your interest. I will let you know how I get on. ATB

[Tico in reply to JackLina]

Hi penelope, i've just come off the the phone to my nurse specialist, i got a full platelet count from feb this year as follows:feb,120.march, high 700's, april, middle.500's.may,200's june middle 400. Wednesday just gone high 600's. Got to see my haemotologist this wednesday as their is no explanation for this erratic pattern no more & as i've been post menopausel for at least a couple of years their is no longer an excuse for it off my consultant! When i see him on wednesday, i am asking for a referral to a MPN specialist near birmingham. Incedently penelope i am 48 years old,so i was medically classed as going into an early menopause which i believe was the price i'd payed for being on hydrea! I also believe my consultant would have been able to have dismissed my erratic platelets if i had been a male patient. Its only the "last few months" he as showed concern for it! As the saying go's: Go figure! Will be very interesting conversion in my haemotologist office that day! I will keep you posted. Atb.🤗tina

[JackLina in reply to Tico]

I truly believe that most haemes are lacking in knowledge about MPNs and particularly causes because it's so rare and as they say, JAK2 gene was only discovered in 2005. When I asked to go on Pegasys, after mine eventually agreed, I believe he went to London to find out about it. that's how much he knew!

When my gp first noticed my high platelet count, she noted it but did nothing but highlight it on my profile. When I later visited my previous gp he said it might be the fact that I'd been taking clopidogrel too long. I'm still taking it.......! truth is they don't know what causes it and they don't test people for MPNs so readily. Why should they when mostly they don't know it exists???????

[Tico in reply to JackLina]

Well, i've certainly had enough now,in the past i've totally disreguarded it & accepted it as one of those things we have to live with,but after being given those results this morning & having a very uncertain time over the birth of my new granddaughter,my blase attitude to it all as gone & i'm determined to get some answers wednesday! Your are so right about some haemo's attitude towards mpn's in general, it is very hard to find a good one but i insist on a referral no matter what wednesday! Unless some haemo's become more aware of these symptons,ie: fatigue, bone pain & night sweats & many more, this will carry on with haemo's dismissing symptoms. After all a lot of people on this forum can't be wrong can we?.... Atb🤗tina

[JackLina in reply to Tico]

Absolutely not! I will be attending the Liverpool Forum later this month and I intend to make our unrest known one way or another. It just is not good enough. They don't seem to take it seriously for what it is because they don't actually know what it is......

[jane13]

I ask haem to read out my results and write them down in my diary, so no problem with print out etc: I get platelets, Hb, whites (HCT).

[mhos61]

Your full blood counts should go back to your GP. This is where I access my fbc from. I ask for a print out. The hospital ‘couldn’t’ give me mine either.

Mary x

[EleanorPV]

If it’s difficult to get hold of your haemo. You could contact your GP. Both should be there to reassure any concerns you have.

My fatigue isn’t usually related to my blood counts its part of PV.

I’ve been on Pegasys since dec 16. My platelets dropped within 4 weeks but it took another year before my RBC started to respond.

[JackLina in reply to EleanorPV]

Thank you. I hadn't realise that report requested by the haeme are sent to my doctor. I will pursue that. Today I asked the nurse at my surgery who took blood for my fasted test (stroke clinic) if I could have copies of my blood results as this is my right according to the GDPR. She hadn't a clue and said I needed to contact the surgery manager.

I'm seeing my own GP on the 19th. I have every faith in her supplying what I need for my own peace of mind.

My concern is the white cells as I seem to have a constant head and chest cold. Coughing too much but not unbearable. I'm having my pneumonia jab again tomorrow after about 16 years. Thank you for the info re your experiences with Pegasys. It is really helpful. All the best. x

[francesb]

I take a notebook and the first thing I ask my consultant is my blood results, he gives me platelets, whites and haemoglobin first thing every time I see him, no problem. Perhaps next time you see him you could do this and in the meantime ask the GP or nurse. Good luck. F.

[JackLina]

Thank you. I'll try that. ATB. Penelope

[nivana]

My haem always sends me a copy of the letter she sends to my doctor - perhaps you could ask for that? Good luck

[JackLina in reply to nivana]

Thank you. I'll give that a go. ATB. Penelope

[Bluetop]

I always ask for, and get, a full copy of the haemotology print out of my results. While at my appointment key figures are discussed, I can't take in all the details and am provided with a copy. I would ask again.

[JackLina in reply to Bluetop]

Thank you for sharing. You are so lucky. I will mention this to my haeme and see what response I get.