Starting Pegasys

[Steve_Essex]

hi all,

I’m about to start the next stage of my treatment journey, 45mg Pegasys fortnightly. I’ve picked up the meds and just waiting for my remaining blood tests to come back before I start.

I’ll update this thread over the next 12 months with various updates from how the first injection went and side effects, and blood counts etc.

hope it can serve as a useful resource for others..

Steve

[Roxanne22]

Hi Steve - this is a coincidence as I am just thinking about the possibility of starting this myself as my wbc remain in the higher realms (c 15m) and plt at present a little lower than they were at 800 or 900 - yet I am concious that after 7 years aspirin and vene, that perhaps its time to sample the meds and see how I get on. what drew you to commence the meds, were you on a medicine prior? I am a lottle anxious about poss side effects but you can only try it and see. I had hoped for Besremi as this seems now the better option for ITF users, but in UK it still comes at a cost which is unpalatable for our NHS resources. Had an appt with 'Elfin' one of Prof Harrisons team about two weeks ago and have taken the plunge of taking a VAF test which I have not yet had, I had to really push for it, but thought it would give me a marker of where my condition is actually at, as far as you can tell.

All best with the meds Steve and let's keep posting the journey as we may need the extra support right now. I prob won't start til Oct, as I have hols planned for mid Sept.

Best wishes Sarah

[Steve_Essex in reply to Roxanne22]

Hi Sarah,

I’d been thinking about it over the last year or so.. I guess “watch and wait” didn’t really sit well with me especially as I’m still pretty young (42) diagnosed at 37…

The decision to go on the meds was a joint decision with the team at Guys. Although I’m still classified as low risk and the formal guidelines prescribe only aspirin and venesection for low risk PV, they felt the evidence in starting Pegasys whilst young is compelling enough, even in the low risk groups, coupled with the potential disease modifying outcomes for some..

They also felt being Jak2 only gives me a good chance of responding well…

So here I am now.. a few days off my first jab… the prospect of being on meds for life is the hardest thing to get my head around.. however I see this as the best available therapy right now.. and taking an element of control back…

Also who knows what will be available in 10 yrs time… So whilst there’s a prospect it can do good for hopefully a long while whilst other research advances.. and it can reduce my 3 monthly venesections then I’m all in!

Best of luck with whatever you decide..

Steve

[Roxanne22 in reply to Steve_Essex]

Thanks Steve, yes we are on the same page for sure with our reasons. I am not sure if I am JAK2 only, would I know that, nothing else has ever been mentioned.... perhaps the VAFF reveals this?

I too am optimistic that better meds, or a cure are around the corner and (as I study astrology there are some indicators of great medical advancements esp in the area of bloods!!) believe it will be sooner than a decade - I am planning around 3 or 4 years - ever the optimist!

What scared me a little is the in depth letter that I was cc d in to my local hospital team outlining my counts, but also outlining in detail some of the misshapen cells, some with 'left bands' which didn't sound promising - I have an appt at York hospital this Fri so will be asking more about that as I was a little alarmed by what I read, but I guess it's seeing in print results which are 'abnormal' yes even after 7 years I am a bit in denial!! So as you say taking the ITF is a bit of taking back some control and optimising my energy levels if nothing else. I used to feel so full of energy like many of us who post on here, was certainly of the work hard play hard mentality.

Best of luck and sending you pos vibes for this next step of the journey - you dive in first Steve, ha ha, I'm right behind you!!

Sarah