Off interferon

[VTAR24]

Hi and tks to all in advance for replying to my mess I just wanted to know what people's opinion is on this I'm off my interferon since Oct due to shortage so all I am on is 150mg of aisprin and I have been doing fine since thankfully I had an appointment with my hemo nurse a week ago and bloods showed my platelets are staying stable at 980 I'm calr r mutation and I'm 49 years old so my conversation with my nurse after she spoke to my consultant was as I am doing well to stay and non symptoms to hold off interferon until I see my consultant again in early January which I am happy enuf to do providing I don't start having any symptoms between now and Christmas that is . The only thing is I am having a headache which isn't bad every now and again but it's not to bad so I'm wondering shud I hold off until January and see as I have no other symptoms and I can get interferon from hospital if needed even if count is 980 I am just wondering really what others othoughts on this is tks again

[ainslie]

I think it would be wise to discuss your headaches with your Haem before January. He/she may say continue as you are but maybe better to check.

[Pigwits]

May I suggest that you have a look at the MON Vlogcast from two months ago by Professor Claire Harrison where she discusses and explains the current, temporary lack of Interferon Alpha. She also talks about Besremi - this maybe somthing that you can discuss with your consultant - rather than the nurse as it will need a new prescription. Your count still seems a little high so it is worth speaking to the doctor. Good luck.

[Amethist]

there can be many reasons for a headache. Maybe whilst you wait for your next appt, try and keep a headache diary and see if you notice a link with anything. eg certain time of day, after a particular activity ( that would inc sitting in a particular chair or length of time of sitting) , after a certain food. What’s your diet like: drinking enough , food sensitivities, could your diet be lacking in certain essential vitamins/ nutrients ?

If you haven’t had one already, ask your Doc for a blood test of vitamin levels, just to rule that out. ( B12 deficiency gave me awful headaches and I was still technically in range but towards the lower end.)

You may not find any link, but worth thinking about .

[Threelions]

I’m off it due to shortage as well until the new year. Really hoping my severe headaches that I had prior to ET diagnosis don’t come back.

I’d speak to your medical team as you don’t want the headaches to get worse.

[Wyebird]

oh please consult with your heamo. I’m suffering now and my platelets are under 450. I’m just so susceptible to them over 400. I’ve just had an appointment and it is a possiblity they’ve risen because of the Covid jab 3 wks ago!!