Hi @Jilly20
I just re read your chat and was wowed by the fact that you’ve had Essential thrombocythemia (ET) for 18 yrs- that’s such an achievement and gives me hope! I know we’re all different but when one reads prognosis on line it can be a bit depressing! How old were you when you were first diagnosed?
Best wishes
Gillyj
Hi Happy2019 and everyone else, ive just popped on here to see if i could see anything on hot flushes, ive started getting a lot lately, Im on hrt which has cured all of my other symptoms, so I wondered if it was the ETtoo?
Thanks in advance
Great to hear from you again @Lynnrobo
Interesting question as you show so well that that your symptoms can easily be attributed to both conditions or the hot flushes could be something completely different.
Perhaps it might useful to speak to your specialist nurse, if you have one, consultant or GP that know you and your whole medical history.
Please do let us know how you get on and really look after yourself.
Evening all, I hope everyone is well and that nobody has been blown away by the wind over the weekend. I had my first 135mcg Pegasys injection on Friday evening and the actual act of the injection wasn’t any different to my previous 90mcg ones. However I have been feeling so very cold since mid-afternoon yesterday along with a bad headache, something that the consultant is aware of and has asked me to keep a record of, as well as my blood pressure. I can’t fault the team at LRI as they all seem to be “there for us”.
But I do feel so incredibly tired, more so than my normal self, and wish I didn’t feel this exhausted. Such is life.
Take care, stay safe and be kind to yourselves.
Jimbo165
Hi @Lynnrobo I seem to get flushes for the first 48 hours after the interferon injection. Sometimes worse than others.
Oh @Jimbo165 I am sorry that you are feeling so rough and personally I am a great one for keeping a record on symptoms.
Doesn’t everything always happen at the weekends and bank holidays.
I also think the wishes that you wish us all seem rather good for you
Please do keep us posted how you feel over the next couple of days and well beyond.
Be very kind to yourself as well.xx
Good evening @Erica, you are very correct that these things, and others, happen at weekends and Bank Holidays! I went to order a prescription for all of my “other” medication on Saturday morning, so that the prescription would be ready for me to collect next weekend from my local Asda (other supermarkets are available!) Pharmacy, to find that they have all been removed from my repeat option pending a review by a clinician! Cue some unprintable words and much huffing and puffing from me, knowing that there is nothing I can do until Tuesday now! These things are sent to try us, and they do!
I’m off to the Land of Nod now with two alarms set for some ridiculously early time for the morning.
Take care, stay safe and Thank You once more.
Hello again @Gillyj - you are right every individual reacts differently to the treatments it really is a case of see how you go with any that you start and how they are too after a few months and a few years too as that is different to everyone. Even doses are very individual with both Peg and Hydroxy some needing very low doses to be well controlled others needing much higher ones, there’s no right or wrong and it’s so good we are all checked with regular haem appts so that treatments can be tweaked up and down as needed. Yes I have been at this game a long time over 18 years - I was in my mid 40s when diagnosed and yet had actually first had blood count problems when I was 18 and was under haematology for some time - but it was the 1970s testing far from what it is in recent years and nothing was picked up, I had symptoms at various times all through my 20s, 30s and 40s GPs would find odd blood counts but they soon rectified again and nothing more was done - permanant extreme symptoms in my mid 40s and a really astute GP who suspected Myeloproliferative neoplasms (MPN) from my blood counts and sent me of to a haem oncologist got the right diagnosis and good care was started. Yes I did 13 years on Hydroxy, it does have it side effects but I tolerated them on always quite high doses - it started to not work so efficiently for me after those years so the team tried interferon - Peg kept my blood counts more stable but did effect me a lot as I have autoimmune conditions too so going back to Hydroxy again in recent months feels more familiar and suits me better. Keep us posted how you continue to get on
Hi @Lynnrobo - just noticed your post re hot spells - yes it is very much an Essential thrombocythemia (ET) thing - when I was first diagnosed my very experienced consultant at the time explained Essential thrombocythemia (ET) has problems with temp control so overheating and hot flashes can come from no where and probably as you have felt it’s very different to the menopausal hot flushes - and yes our treatments can have it as a side effect too 
but it is an Essential thrombocythemia (ET) thing and even central heating or hot shops or cafes can make you feel very hot, lightheaded etc - I think over time you get used to what can trigger or not help them and work around it - as always though do mention it at your next appointment so it can be checked if needed 
Thanks Jilly
Its always more reassuring to have a reason for something
Hi all
Does anyone attend the Myeloproliferative neoplasms (MPN) voice conferences? I went last year and can highly recommend them, lots of drs present to ask questions
Hi @Lynnrobo - no I’ve not heard of those conferences- are they in London and any idea when next one is? Sounds a good idea
Thanks
I’m going to the MPNVoice forum on the 2nd in Dundee, I’m not sure what to expect but it’ll just be good to talk to others.
It’s been a year since my diagnosis and I’m still a bit lost about what to do with my symptoms.
Gosh @Jilly20 - you’ve certainly been through it over the years but fantastic that the treatments are keeping it in control 
it’s so good to hear that! -and it makes a difference to have a consultant one has faith in .
Take care
https://www.mpnvoice.org.uk/get-involved/patients-forums/
They are really good, lots of people with mpns and consultants attend from the local hospital the conferences are all over the country, you even get lunch you just make a donation
I was the same last year and it helped me attending, but now im 2 years in and other questions pop up so im going to the Newcastle one again in October. Good luck
Hi gilly, ive posted the link x
Thank you 
I shall take a look
Gilly
Good evening @Gillyj, and everyone else, I hope you are all keeping as well as possible.
Just an update following my first 135mcg jabbing. Whilst the actual act isn’t ant different from my “normal” 90mcg one, the effects were much longer lasting (expected) and way more debilitating. The usual post jab sniffles came on after the same sort of time, a couple of hours later, but I also had a headache arrive very shortly after the sniffles, which lasted for a night and a day. My fatigue increased and a general lethargic feeling appeared later on Saturday and throughout Sunday. Monday and Tuesday were rough days at work, and Wednesday was blooming awful for much of the day at work, with a number of colleagues seeming quite concerned about me, and Thursday I was feeling not too bad. Friday was the first day, post injection, where I didn’t have to take any painkillers; I don’t like to take painkillers at all and I suspect I’m not alone in that amongst my fellow/fellowette Forum users.
Today (Saturday) I am just so very worn out after a long and tiring week of work, but that’s nothing unusual, sadly.
I am keeping notes and will be letting the Consultant know.
Take care all, stay safe, be kind to yourselves, and remember to keep on smiling.
Best wishes,
Jimbo165
Oh @Jimbo165 what a debilitating, fatiguing week you have had, really be kind to yourself, I find it take me a while to build myself back up, but somehow I keep smiling.
Glad you will be keeping notes and letting the consultant know.
Rest and recuperate