So after having platelets hovering around the 1500 mark for a year the interdisciplinary team at my hospital trust has finally got nervous and recommended i go onto PEGInterferon. Im 38 and have just been having venesections and Aspirin since being diagnosed PRV JAK2+ a year ago. It was made clear to me it was entirely my choice to go onto meds and it was not a clear cut decision but the bits of research I have read that suggest PEGINterferon at an early stage can help prevent Scarring at a later one pushed me towards trying it.
Unfortunately my Haematologist openly admitted she had never used PEGInterferon and at the start of the consultation actually was not sure they even could prescribe it (had to hunt down a pharmacist to confirm). She has started me on 45mG a week raising to 90mG after 2 weeks. I had my first injection at the hospital with a nurse so i could see how it was done This was on Wednesday around midday. I was all prepared for side effects and took some paracetamol straight away and settled down for a tough night..... and nothing really happened. Woke up once in the night with a slightly achy arm and was tired next day but ultimately not much to report. Which is great if that continues but I am aware I am on the lowest dose possible right now and have only had one.
So my Question is, after all this rambling. I lead a pretty hectic life, I travel a lot for work for extended periods of time (up to 3 weeks away) and I am worried if I do get side effects they will fall on important days when i have meetings or appointments I cannot rearrange. Is there a window of opportunity to take your dose of PEG? For examply my first was midday on a Wednesday simply because I was in hospital with a nurse. Do I need to do it every week on a Wednesday around midday or can I judge it based on my calendar and move it a day or so either way? It will all me mute if I continue not to have any major side effects but it would be good to know.
Also, if it looks like this is working for me, how often are people who are already using this monitored (blood test and consultation). Like i said I am away sometimes for up to 3 weeks and could have a phone consultation if required but getting a blood test done before hand would be tricky if not impossible.
I know these are all questions for my Haematologist but, as I said, she had never used PEG before and I think I had a bit more info than she did from this forum and other sites. I will go back and ask next time I see her but some real world experiences would also be good.
Finally, and apologies for the long post. If I wanted to be referred up to Guys Hospital (where I assume they have used PEGInterferon quite a bit more) would I speak to my GP, Or my Haematologist, or write to them direct myself... I have private health care with my work that I have not utilised yet as I have been very happy with the NHS care but if that would help I may look into it.
Thanks for reading and if you made if this far thanks for pushing through to the end.