Finally getting around to sharing my experiences of starting Pegasys. First a little background. Diagnosed with ET JAK2+ in 2019 after a decade of scintillating scotomas with increasing frequency at almost weekly. Aspirin cut this to approx. 90 days! Over the next three years increasingly struggled with fatigue and brain fog. I could be very energetic for a few months or very lethargic. Started having venesections as a test and these helped immensely. Although the balance with low iron was a challenge with very similar symptoms.
In spring 2023 my consultant asked if I'd consider Hydroxy or Pegasys to see if it helped. Being a relative youngster I didn't expect this due to age and risk. I certainly didn't expect Pegasys to be on the table. Like many MPNers we do our research. Even if it's years down the line. I'd probably already made my choice. Resist taking Hydroxy as long as possible in the first instance.
My consultant also asked if I'd like a second opinion at The Christie in Manchester. I'm lucky, it's still very local. My reaction was "what, with Prof. Sommervaile?" answered with "yes, I have discussed your case from time to time" It's was heartwarming to know my consultant discussed my case with the 'experts'.
So, I started with a fresh pair of eyes in May 2023 and the dreaded bone marrow biopsy. Which although unpleasant wasn't as painful as feared. The BMB showed nothing unexpected. My allele burden was 24%. I also got a free upgrade from ET to PV (sorry if that sounds flippant). My HCT has never gone beyond 0.49 so I have a view that my ET / PV is possibly blurred.
Now to start Pegasys. I delayed this until September incase of adverse side effects during the holiday season. So here goes. Start dose 45mcg
The nurse demonstrated dose one and I felt pretty terrible with flu like symptoms that first week. Then it was my turn to self inject. Despite not feeling great I trusted that the body will adjust. Week two was a little easier. Then on the eve of dose three I finally got covid. It's add to say this was a relief. Yes I felt truly awful for a week but I knew it wasn't the Pegasys. By dose four all was fairly ok. I could feel a bit off a day or so after but paracetamol helped. I'm now at week 19 and still on 45mcg. It would have been increased at week four but was left at 45 due to the covid infection.
At this point I do feel a lot clearer in my head and have more energy (or less bouts of fatigue) It's always hard to tell as I tend to use any energy I have. I'm no good at putting my feet up. So I may still be tired but I'm doing more. I certainly take fewer afternoon naps.
In conclusion. I'm glad I went ahead and tried Pegasys. Once over the prospect of self injecting and the early flu like symptoms everything is moving in the right direction.