Hi @LynnB I have found that my emotions vary all the time and I am also my worst enemy as I feel better, then overdo it, then feel low and my fatigue and tiredness sets in, and so I go on.
I know what you mean by ‘giving in to it’ but I am now kinder to myself and look at it as ‘self care’ and sometimes I do have a nap, but not too much so as I do not sleep at night, I find it is a balance again and I am not good at balance in my life (or in my Pilates classes)
I hope the weather improves soon and please do keep posting as I am learning a lot from you.
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@Gillyj I am expecting the dose to go up but she does seem to want to wait a while as i get used to the side effects. I hope your increased dose doesn’t cause too many problems.
Have you noticed any loss of hair? I definitely feel some of mine is falling out.
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You too. I’m so new to this. We’ve been invited to a house warming on Sunday and I’m not sure if I should go. There will be a lot of people there and I don’t want to catch anything but I also don’t want to lock myself away! My husband and I are getting our RSV vaccination on Monday. Take care
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Hi @LynnB I noticed your message about giving in to it and i do understand the feeling but have learnt over the years to just do what you can and not push it too far. Let your body tell you what it needs. We all end up doing to much and leaving ourselves drained but i think it is just a case of learning from the signs to stop so we have the energy to carry on later. You are at an early stage of medication and they can really knock you about.
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Hi @Chrispy thank you for your help. I do find that going out shopping is making me very tired. We live 50 mins drive each way, on a good day, from our nearest supermarket. We do a big shop, but I do like fresh produce. We get ASDA delieveries as well. I am trying to pace myself, honest 
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Oh, @LynnB I am also trying to pace myself, honest, but it is not my strong point.
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Good afternoon all, I hope that everyone is keeping as well as they can be.
I’m now home after my appointment at LRI this morning, and accompanied by what I would like to call “mixed reviews”!
For the first time since my diagnosis (March 2017) my liver function is within the “normal range”, albeit by the skin of its teeth. The Consultant is recommending that my aspirin dosage is restored to its former 1 per day instead of 1 every other day to try and reduce my headaches, which are a recent addition to the ‘Jimbo165 list of ailments’. She is also increasing my Pegasys jabs from 90mcg, up to 135mcg per fortnight, to try to stem the rise in my platelets. This may be a short term effort as the increase may not be received well by my liver. She also informed me that there may be difficulties in sourcing the Pegasys; something that could be a cause for concern or even anxiety for the Blood Cancer Community.
As always, take care, stay safe, be kind to yourselves and keep on smiling.
Jimbo165
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Hi @Jimbo165 thanks for the update,
So some tweaking to your meds.
Perhaps don’t panic and wait and see on the Pegasys side, previous times when they have said about the likely hood of meds shortages, I have been OK, although we might be down to the old ‘postcode lottery’ again.
I am still smiling, but do not seem to be catching up with myself today.
Be kind to yourself
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Hi @Chrispy
No I haven’t noticed any hair loss or thinning, had 2 doses of 60 mcg and it hasn’t affected me as much as I thought it would tiredness wise. I think finally I’m learning to pace myself a little. On days 1-4 mornings I can play tennis, garden or go to the gym and then afternoons I have to take it easy. I’ve got a jigsaw on the go so that’s quite nice to sit down for and then days 5-7 I can do more.
Hope you’re doing ok and taking it easy
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Hi @Jimbo165
That’s good news about your liver function 
. Have you been on that new dose of interferon before? How were you with it? Hope your headaches get sorted.
Take it easy and say strong 
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Good evening @Gillyj, and everyone else, thank you for your kind thoughts and message. No, I haven’t been on the 135mcg dose before, and I will be starting that this coming Friday. The headaches seem to be occurring a little more often these days but I am enjoying a week off work and have been out for the day with my eldest grandson (age 12) visiting the Imperial War Museum at Duxford. I’m suffering for it now though as I feel beyond exhausted.
Still, back to work on Monday, and I am still managing full time, just about, although the last day I worked (Thursday) was a ridiculously long one from 6:30am through to 6:40pm! Such can be the life of a lorry driver.
Take care, stay safe, be kind to yourself and keep on smiling.
Best wishes,
Jimbo165
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Good evening @Erica, my apologies for the delayed reply, I thought I had responded to your kind message but clearly I hadn’t.
Well if the ‘postcode lottery’ for medicines is as favourable to me as the actual Postcode Lottery, then I am in BIG trouble! 
I know what you mean (I think!) about not catching up with myself; in fact I am probably more likely to meet myself going the other way these days as I seem to be soooo busy and, dare I say it, overdoing things. It is very difficult to not be busy when you have been so for most of your adult life.
I hope that you are now fully recovered from your own recent “issues” and are as well as you can be.
Take care, stay safe, be kind to yourself and keep on smiling.
Best wishes,
Jimbo165
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Hi @Jimbo165
That sounds a super day out- I’ve been there with my own children many years ago, 12 is a great age isn’t it and he’ll remember that day out for ever. My granddaughters are 8 and 7 and live just 3 doors away so I’m always busy with them. I wonder if blood cancer particularly affects busy people as it seems to me that most of the people chatting on this forum are used to being busy and like being busy and that’s something we all find very hard in having to “pace” ourselves ( I hate that word😂).
Do keep us posted on how you are with the 135mcg dose, I shall be thinking of you on Friday. My tummy is starting to show reddened areas where I inject so I understand now when you said a while ago that yours was full of bruises.
Look after yourself- at least being a lorry driver there’s a lot of sitting so hopefully you can carry on working for as long as you want to. Keep smiling and staying positive,
Best wishes
Gillyj
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Good morning @Jimbo165 @Erica @Chrispy and everyone else who’s on interferon- quick question- is anyone else feeling ravenously hungry on and off during the day?? It’s ridiculous- even after I’ve eaten I feel hungry- is this the interferon doing this?
I’m trying so hard not to put weight on!
Have a good day everyone
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Hi @Gillyj - I had five years on Peg interferon for Essential thrombocythemia (ET) - and YES feeling very hungry can be part of it 
I found one of the best ways to tackle it was to up my protein intake and it helped to have high protein foods each meal and some snacks with me of nuts or a Greek yoghurt when the hungries come on. I also found I needed to eat more thro the morning that I would usually but trying to use proteins for that seemed to help.
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Good morning @Gillyj, I hope you are well. An interesting question and one that makes me wonder a lot. Speaking for myself, I rarely feel hungry and have to actively make myself eat as I know that I must eat and also many of my other medicines are marked “take with food” too. Having said that I do, very occasionally, feel ravenous and, in homage to my Brummie roots, “I could eat a scabby horse”! Sadly there is never a horse, scabby or otherwise, nearby at that precise time, and usually I am nowhere near food when these hunger pangs attack!
Today will be my first 135mcg jabbing session and I’ll let you all know how I am feeling over the next couple of days.
Hi @Jilly20, I’ve now been sticking myself with Pegylated Interferon for over 6 years now and find that early morning meals were, and are, the most difficult as I really don’t want to eat then but, as above, I have to because of other tablets etc. To be fair, I’m not up as early as I used to be back in the 90’s, when I could be up at 2am for work, but I was fit (ish) and healthy (ish) back then, as well as very obviously stupid to be up at that time of the day. Fortunately my weight is reasonably stable and only slowly coming off of me.
As always, stay safe, take care, be kind to yourselves and carry on smiling.
Best wishes,
Jimbo165
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Hi @Jilly20
Thanks for your reply- it crept on me insidiously, it didn’t start straight away so I was a bit surprised! Yes I’m trying to up protein intake and I have a bag of nuts always to hand they’re great! Are you off interferon now? Can I ask what you’re on now and how’s it going?
Thanks
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Hi @Gillyj I found that very interesting as i have the opposite problem. I have a small appetite now and graze rather than eat big meals. I find it difficult to eat a main meal completely. Just shows we are all very different in how we react. I rarely eat in the morning at all now. I do need to sort out a more balanced diet rather than nibble on crackers and ginger nut biscuits.
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Yes it’s a case of finding what works for each one of us isn’t it - I thought after I posted earlier I have felt that need for good quality protein over the years of being diagnosed with Essential thrombocythemia (ET) - 18 years - but it was enhanced after going on Peg and the few days after injecting especially - but as others have said they have felt the opposite so it’s the individuality of both disease and treatment in each of us. Yes I am now back on Hydroxycarbamide - I had that for 13 years on diagnosis then over to Pegasys for five years now just recently back to Hydroxy again 
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Hi @Jilly20 and everyone
I’ve never been on hydroxycarbamide but obviously it’s something I may have to at some point- what’s it like being on it and what are the side effects? How does it compare to interferon? I know we all react differently but would be good to get an idea! Which do you prefer being on?
It’s funny how some of us on interferon are ravenous and others our appetite has diminished! I could do with mine diminishing 
Take care everyone
Gillyj
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