Good evening @Jimbo165 or is it night!! I go to bed so early these days!!
I have been thinking of you and wondering how you were doing- what a rotten week you’ve had- I’m so sorry to hear it. How long have you got to be on the higher dose do you know? Hopefully your body will acclimatise a little to the dose and next week might be a bit better 
.
Take it as easy as you can and look after yourself , keep sharing how you’re feeling- we’re all here supporting you
Best wishes
Gillyj
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Hi @Gillyj, at the moment I am looking at only one further 135mcg dose, in another two weeks time, or a fortnight, whichever comes first, and that will be on Friday the 13th: what could possibly go wrong? 
I will then have more blood tests, followed by a chat with my CNS on the 30th of September. The blood test results will determine what the next step, or steps, will be.
Thank you for your kind words and thoughts.
Jimbo165
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Morning @Jimbo165 - glad to hear you’ve only got 1 more big dose scheduled and that you have 2 weeks in between to recover. Hopefully you will have some better days this coming week.
For the first time last time I injected it drew a drop of blood and then bruised straight away- I remember you saying your tummy was full of bruises- is this because I’ve injected into the same site as a previous injection? Or is this just the norm after a few weeks of injecting?
Enjoy your Sunday
Gillyj
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Good Morning @Gillyj, yes I often get a small blood spot appear as I withdraw the needle but, fortunately, any flow stops fairly quickly. I do indeed have bruises either side of my “post-natal knot” (Belly-Button!) as I tend to inject in similar zones on alternate sides. I’ve never felt brave enough to inject into my thighs as there is more flab available on my stomach! In fact after so many injections over the last 6+ years the skin around the injection sites looks a little discoloured. This colour deepens and fades between jabs which helps to indicate which side was last abused. I occasionally get a bit of a rash at the point of entry too, but that could just be a part of the itchiness that we Myeloproliferative neoplasms (MPN) folks suffer from anyway.
All okay-ish at this end and I have been all industrious already on this dull Sunday morning as my ironing is all done now! 
Take care, stay safe, keep smiling and be kind to yourself.
Best wishes,
Jimbo165
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Hi @Jimbo165 , yes I’ve noticed discolouration at injection sites- good job I no longer wear a bikini!!! 
I suppose I have the bruising to look forward to! I also get slight itchy prickly skin in the morning but it doesn’t last long- never had that before, it came on with interferon.
Enjoy your Sunday and as my husband says to me- pace yourself ( hate that word 
)
Best wishes
Gillyj
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Hi everyone. I wonder if everyone gets a routine to their reactions to interferon. I am asking as previous cycles i have been ok for the first 24 hours after injecting but this morning, after injecting last, i felt horrendous. I had a gym session with my PT and nearly fainted. Luckily he knows what he is doing and had me on the floor with my feet up for a couple of minutes before i felt better. I did have a bad night last night and have had bad news about 2 different friends so wasn’t in the best place but it was very unusual. I do have an appointment next week so will ask about it but it was very worrying. Hopefully just a one off and i should push myself to eat a proper breakfast first.
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Hi @Chrispy sorry to hear that you had a bad night after having bad news about 2 friends and also nearly feinted during a gym session.
I hope others can share their interferon experiences for you.
Yes, perhaps a proper breakfast is a good idea.
Look after yourself and please do let us know how your appointment goes next week
Hello Chrispy - sorry you have had a few things all at once - yes what you mention happened at the gym is an interferon “thing” when you can suddenly go from absolutely fine to very weak and faint - I know I found during my years on Peg I really needed to have good protein breakfasts every day especially if I was going out almost it seems you need the extra energy that provides. Along with the usual use plenty of water. But yes what you describe is an interferon thing some have it more than others. Keep us posted
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Thanks @Jilly20 that is very helpful. I think i did drink less and i will definitely increase breakfast before a gym workout. It’s all a learning curve to see how our bodies react to different things when interferon is added.
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Hi everyone. I saw my consultant on Tuesday. Spleen scan is normal. He now wants to do a bone biopsy to check for mylofibrosis ?? And check for the jak2 mutation. From memory I’m sure they said I had the jak2 when I first was diagnosed so really confused.
Has anyone else had the biopsy?
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Yes, @Happy2019 from what I have read it is not unusual to have a bone biopsy
I attach the information from the Blood Cancer UK website about bone marrow biopsies
Bone marrow biopsy
This is also called a bone marrow test, bone marrow aspirate or bone marrow examination.
Bone marrow is a spongy tissue found inside some of your bones. It is where your body makes blood cells.
A bone marrow biopsy involves removing a sample of bone marrow to look at under the microscope. This can show whether your body is making normal, healthy blood cells or not.
How is a bone marrow biopsy done?
The bone marrow sample will normally be taken from your hip bone. You’ll lie on your side with your knees tucked up to your chest. The doctor or nurse will give you an injection to numb the area (local anaesthetic).
The doctor will then use a large needle (aspirate) to suck out a sample of bone marrow from your hip bone. A piece of bone may also be taken using an instrument called a trephine.
A bone marrow biopsy can be done on the ward or in the outpatient department. It takes about 20 to 30 minutes, but removing the bone marrow sample only takes a few minutes.
You can usually go home the same day if you’re feeling well enough. You’ll have a bandage over the area, which you should keep on for 24 hours.
If you’re having sedation, you’ll need someone with you to take you home and stay with you overnight.
A bone marrow biopsy is a common procedure and any risks are small. There is a small risk of damage to the area near where the biopsy is being done, but this is very rare.
Is a bone marrow biopsy painful?
Having a bone marrow biopsy can be painful, but it seems to vary – some people say they don’t feel much, some experience a pulling sensation, and others find it painful.
You will be given a local anaesthetic to numb the area. You might also be offered a tablet to make you feel sleepy (a sedative), or gas and air to help with the pain.
If you are nervous about the test, speak to your healthcare team in advance. You may want someone to come with you too.
After the test, your hip might hurt for a few days, and you may need some painkillers to take at home. The soreness should settle within a few days.
Bone marrow biopsy results
You won’t get your results straight away. It can take one or two weeks to get them, and you’ll usually have a follow-up appointment.
Waiting for test results can be a worrying time. If you have any questions, or just need someone to talk to, contact our Support Services Team.
I hope others will share their various experiences, we are all different
Please do let us know how you get on and be very kind to yourself.
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I just wanted to chip in and reassure you about the BMB. I too had my JAK2 confirmed through blood test results but having sought a second opinion, I then had to have a biopsy. I was terrified and slightly resistant, as in my head I visualised an oil rig style hydraulic drill! The info @Erica has posted is a factual representation of the procedure.
Although your post actually says you are confused, the consultant told me it was to establish a baseline so an appropriate health plan could be established.
Hope that helps 
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Hi everyone. Just an update on my position after what i thought would be a routine appointment at the hospital. I hadn’t been feeling great on the interferon so had a list of side effects to discuss. However as i waited for my blood to be taken to test i felt weird and my fitbit was showing a heart rate of 110 ! I was only sitting waiting to go in for the test as i have done many times before. I mentioned it to the consultant and he checked my heart rate and found the watch to be accurate and my arms were shaking. This was then followed by an ecg and he had additional blood tests done telling me not to leave until the results were known. He seemed to think it was the interferon and i should move to hydroxy. Anyway the results did show an over active thyroid and the heart checks were fine. I was given a beta blocker to lower the heart rate. As i was leaving he told me to stop the interferon and he would discuss things with my local consultant. Then this afternoon i got a call from my local consultant telling me she had discussed it with yesterdays consultant and the one who originally decided i should take interferon with the result that it was decided i just needed to stay on interferon at the 45 dose, but only do it every 2 weeks with a blood test done a week after the injection.
Worried about how i will react and what the reasons are but i do trust them all. I did see someone about my thyroid before when another medication reacted badly so i will try and see him for his advise too.
Sorry that is all a bit of a ramble. just upset and confused.
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Oh @Chrispy when you are upset sometimes you just need a confused ramble.
I think it is good to be comfortable with medical decisions and to write down all my fears, questions and practicalities and ask everyone, so that I gain everyone’s opinions.
You can always talk to the Blood Cancer UK support line on 0808 2080 888 as well
Please do let us know how you get on and be kind to yourself you have so much to take in.
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Hello @Chrispy - sorry you have had a difficult time with your interferon I do appreciate how frightening it can be - it’s usual to start to span out injections to two weeks then often three or four weeks if counts keep stable - you trust your team and keep being very honest with them as to any effects you get so they can assess treatment going forward - interferon is very individual in its reactions and as time goes on so it really is a case of see how the next one goes. I have Essential thrombocythemia (ET) and had 13 years on Hydroxy on diagnosis then nearly five years on interferon and recently have gone back to Hydroxy - both treatments are very similar in effectiveness but work very differently so it’s finding what can be tolerated in each patient - but I do empathise with what you are saying as I know it is upsetting when side effects are difficult ones. Keep us posted
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Hi @Chrispy - really sorry to hear of your bad experience recently- hope you’re ok now? It hasn’t happened to me but maybe it’s because I always have a good breakfast ( can’t function without one!) are you ok apart from that?
Best wishes
Gillyj
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Hi - you may have already had your bone marrow biopsy but if you haven’t I wanted to share my experience of it. Despite being an ex nurse ( or maybe because of that) I was petrified before I had mine/ worrying for days and then on the day my blood pressure was sky high. Once the procedure started it was nothing like I expected- the nurse was lovely telling me all the time what was happening and it was over with quite quickly hardly hurting at all, more just a pushing down. I don’t know why I had got myself in such a state! So - try to relax as much as possible- it’s not as bad as one thinks.
Take care
Gillyj
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Hi thank you for your reply. Problem I have is I have issues with the back of my pelvis, hip and thigh where they have said the biopsy will come from and just to rub it is painful so really want them to sedate me for a few mins to do it. Hopefully they will. I’ve spoken to friends who’ve had it done also who say it’s painful for a few mins.
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Hi @Happy2019 - I didn’t find it painful as such- just a momentary twinge- but we’re all different. I hope they can give you something to make it a little more pleasant for you.
Take care and will be hoping it all goes well
Gillyj
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@Happy2019 For my last one i was offered gas and air which i used and found it help me. Previously i was just injected with local anaesthetic which was not so brilliant as i still felt the sting. It was done very quickly though so the pain is short lived.
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