Hi @Chrispy I find keeping a diary helps me of what is going on and medication and how I am feeling and after reading your post perhaps the weather and it is the humidity that gets me.
Yes, your thyroid is also in the mix, what complex beings we are.
Look after yourself
Good evening @Chrispy, @Gillyj and dear @Erica, as well as anyone else following this thread. I am sorry to hear that you are feeling so shattered. Do you feel that the effects are more âsevereâ than when you were on the Pegasys?
I hope that your blood works are positive (or negative, whichever is the âgoodâ one! 
) Iâm impressed that you are able to âfunctionâ at all on fortnightly injections!
For myself, Iâve had a couple of rough days starting yesterday morning (Sunday) when I woke up at 6:59, saw the time, panicked thinking it was Monday and that I had forgotten to set my alarm. As I was phoning in to work to apologise for my lateness, it dawned on me that it was only Sunday, and not Monday! I then felt a fool for the rest of the day!
Then when I got home from work today I couldnât find my house keys! Cue much panicking from me as the door was locked, which can only be done with the key! Fortunately I have a spare key in my work bag. It turns out that I had locked the door and then failed to remove the key. A neighbour spotted the key and held on to it for me. I think that I am more tired than I want to admit to now. And also very âheadacheyâ too.
Such is life.
@Erica, I hope that âthingsâ are settling down for you somewhat now.
As always everyone, take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
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Oh, @Jimbo165 what a couple of days and what a good neighbour.
I reckon that you need a bit of string so you can tie your key round your neck.
However I am very impressed that, firstly, you have got a spare key in your work bag and, secondly, that you remembered you had!!
Yes , everyone, take care, stay safe, be kind to yourselves and keep on smiling.
Oh, Iâm smiling.
Good evening @Jimbo165 and everyone else- I am in France on a 2 week holiday with my family. Weather has been a mixture of sunshine and rain but I gather itâs due to get better! Selfishly I heard that home has had tremendous downpours which I am delighted at as then my pots and vegetables wonât need watering!!
I am constantly losing things and misplacing things- I just tell myself ( and whoever will listen) that itâs my treatment causing it, so donât beat yourself up @Jimbo165 . Lack of Concentration is one side effect of interferon.
Take it easy and rest when you can
Gillyj
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oh @Jimbo165 you must be glad the day is nearly over. You did make me laugh as it sounds so familiar. Concentration and memory are definitely not great with me at the moment. I think i felt better in myself on pegasys. They are threatening to double the dose if they increased frequency doesnât help. I am hoping that pegasys will be back on the agenda soon.
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Good evening, or should I say âBonjourâ @Chrispy, and everyone else, I hope you are as well as can be.
Well I have survived (so far) all that today could offer, and ((touch wood) other lucky charms are available!) without mishap, so I am taking that as a positive.
Yes, I felt, within myself, less rough and exhausted whilst on the Pegasys but was told, in December 2024, that it had stopped working for me, so I am not expecting to be âallowedâ back on it any time soon.
I am suffering from/with more itching, and all over too, which is mildly annoying but I suspect is also partly down to my increased and enhanced exhaustion!
Such is life.
Take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
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Hi @Jimbo165 @Gillyj and everyone else. Well the good new is my platelets have at least dropped and are now below 1,000. Hoping it will continue downwards when i get tested next. she did a full check on me physically and mentally so all seems good. she even asked if i had any rashes so it would seem to be a known side effect. I am ok so far. I did do a jab last night and again feel exhausted. Never the same timing each cycle. I have started writing things down and see what happens. I did mention i am having trouble coping with hot spells of weather that i didnât get before but she didnât seem to think it related to my medication.
Anyway hope you are all well and making the most of summer.
x
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Hi @Chrispy @Jimbo165 and everyone, thatâs amazing that your platelets are coming down so well 
.you must be thrilled that the besremi is having the desired effect! Iâve asked my consultant if I can reduce my interferon as my platelets came down from 800 to 360 and sheâs said if I can get down to 200 then they might let me 
. Apparently platelets fluctuate- I didnât know that.
Any Improvement in how youâre feeling? @Jimbo165 ?
Take care everyone
Gillyj
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Good evening @Chrispy and @Gillyj along with other viewers and readers. Iâm chuffed to read that both of your platelet counts are heading in the correct direction and hope that a sensible and manageable level of treatment can be arrived at for each of you soon.
My own platelet count has, over the years, taken on the appearance of a roller coaster, with more âups and downsâ than a fiddlers elbow!
Still very itchy, with a few âlumpyâ rashes in places, but I will speak with âthe teamâ next week and see if they can offer any (useful!) advice.
I feel utterly exhausted still, and have a horrible feeling that this may be âthe way forwardâ for me.
As always, take care, stay safe, be kind to yourself and keep on smiling.
Best wishes,
Jimbo165
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Good morning from sunny France to @Jimbo165 @Chrispy and everyone else! I say sunny because on the most part it is , however itâs drizzling right now!!
I think platelets have a mind of their own, I was thinking that once they came down they would stay down but youâre right @Jimbo165 , thatâs what my consultant said could happen and they can go up and down like a rollercoaster- hence she was reluctant to lower my dose until I can prove they can stay down! Oh well, it was worth a try!!
This tiredness is a pain in the âŚâŚ.. isnât it!! Do let us know what your team says next week when you see them and take it easy until then
Sending you some energy vibes 
Gillyj
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Thanks for the energy vibes, they are very welcome, sending some back to you too @Gillyj.
Good evening @Erica and @Gillyj, along with everyone else, hope that you are well and that the football isnât too stressful for you!
I wondered where my âinbound energyâ had gone; it would appear to have been intercepted by dear @Erica on its way from France to the Midlands! Make good use of it please.
Meanwhile, and as always, take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
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Oh sorry @Jimbo165 but if there are any energy vibes going Iâm nabbing them, no wonder I have a smile on my face.
as I long as someone makes use of them
Gillyj
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Hi Rosita, Im also new here and was diagnosed with Essential thrombocythemia (Essential thrombocythemia (ET)) 18 months ago and on watch and wait. I found that because it is an invisible cancer many people forget about it, which also made it easy for me to ignore it most of the time. Although, at the back of my mind I was very aware it increased my risk of stroke and heart attacks, which did concern me. Often wondering why they give medication at 60 but not at 58/59, as if the short age difference ruled them out. So now I am rather relieved to be almost 60 and starting the medication. Very scary and worried about the side effects but either way, living with Essential thrombocythemia (Essential thrombocythemia (ET)) is a worry that never goes away and difficult to share or taken as serious by people because it cant be seen. Dont know if it will help but I just keep telling myself if I have to get cancer it is one of the better ones to get because I can still live my life pretty much the same as before. I have learnt to live with tiredness etc but for me, keeping my life stable at the same time trying to minimize the risks e.g. healthier diet, helps me cope.
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Hello Christie, I got diagnosed two weeks ago and was put on 100mg aspirin , feburic, iron and chemotherapy tablets called (hydroxyurea)hyrea 500mg. Iâm 44 and my hematologist told me I was in the high risk category. Some people start with aspirin. My platelets kept rising and I have a massive spleen 22cm!
So far my doctor suspects to see some fibrosis and suspects primary myelofibrosis. It is a worrying time and full of uncertainty. Finding this page is very helpful and comforting. I like you feel very tired all the time and suffer with headaches daily.
I do worry about the blood clot side or things or the possibility of bleeding. I work with children and itâs challenging with the stress of not knowing which myeloproliferative neoplasms I have.
I wish you all the best to you and everyone else going through this.
Louise
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Thank you so much for the email. Its worrying when given the choice and not really knowing how everything ties in with other illness, knowing other peoples experiences is helpful and takes away some of the fears that come with reading the side effects etc.I think being able to carry on as normally as possible helps me alot. Hope everything continues well for you.
Best wishes,
Christie
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Hi @Lou-ET @Christie @Rosita sorry to Hear that youâve all been recently diagnosed with an Myeloproliferative neoplasms (MPN) - itâs frightening when it first happens but I found after the initial diagnosis and medication starting I was able to get on with my life again. @Lou-ET have you had a bone marrow biopsy yet to determine which type you have?
I was diagnosed 18 months ago and have Essential thrombocythemia (ET) plus Chronic lymphocytic leukaemia (CLL) and was put on aspirin and pegasys interferon. My platelets are now down to normal levels and apart from tiredness ( normally because I cram too much in my day) I feel pretty good.
this forum is brilliant and there are people on here who have had blood cancer for many years and still going strong. At a conference I went to a lady spoke who had had an Myeloproliferative neoplasms (MPN) for 30 years- so that gave me hope!! And there are many on this forum the same.
Take care everyone and look after yourselves- as one of you said/ no one else can see it or know what weâre feeling or going through which makes it hard!
Gillyj
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Hi @Jimbo165 @Erica - feel as though Iâve been absent from this chat line for ages- apologies!! Did you have a good holiday @Erica ? Iâve been to France for 3 weeks and had a lovely time with family.
How are you doing @Jimbo165 ? Any improvement in headaches and tiredness?
Best wishes
Gillyj
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