I was diagnosed with pv last year and I’m starting pegasys this week.
Quite nervous I won’t be able to do it myself!
Daft questions I forgot to ask, do I carry on with aspirin, I’ve just started with gabapentin, can I carry on, do I need a sharps box, where do I get it from in the future -gp?
I worried I couldn’t inject myself but once you do it, and it was painless, it is now easy to do. I got sharps box from GP, and they swap out when full. I still take aspirin. Hope that helps. Peg has been good for my results, good luck x
Painless?? That’s good to know.
Right I’ll ask the gp about a box.
Where do I get the wipes from
Thanks
Hi,
I started on Pegasys 5 weeks ago and it has been no problem. The injection is painless and I have had no side effects so I would encourage you to give it a ago and hopefully your experience will be the same. My bloods normalised within 2 weeks which was a welcome surprise and I am feeling great with no fatigue etc.
Try and be positive about Pegasys as my experience is that it helps when you are starting a new treatment.
Fantastic
It’d be great if it cuts down on venesection, fab if there’s less bone pain but I’m really interested in the slowing down on the disease tbh
John
That’s great news. I’ve had a good response with Platelets and WBC now good, RBC still slightly high, hovering around 6.2. I started at 45 mcg in April and build up to 75 mcg. Aiming for 90 mcg since this appears the optimum one year dosage for molecular remission according to the Interferon bulls (Silver et al).
The big dilemma is when to drop dosage once haematological remission achieved. I have high Allele Burden so targeting molecular remission. Just had another AB test, hoping Pegasys performing its magic for me.
What has been your dosage regime?
Best
Paul
Hi Paul,
I was started on 90 mcg straightaway and it has caused no problems, so I hope to stay at this level for a while and then have a check on the molecular response. Fingers crossed it continues to go well.
John
John
My limited understanding is that best to limit high dosage to c. 1 year and then hope to reduce to lowest level to maintain haematological remission. This reduces risk of side effects such as depression and autoimmune.
A subset of us should also benefit from varying degrees of molecular remission. Perhaps 25 - 50% of us? Then the dilemma is targeting low dose haematological remission (minimising risk of long term side effects and possibly extending the time Pegasys is effective) versus getting AB right down, perhaps to zero, with higher dosage.
I’m hoping to get AB below 50%, was 75% March. My understanding is that over 50% increases progression risk (risk of additional mutations) to some extent although Hems not overly concerned. ie no direct correlation.
Best Paul
Was the best drug for me. Only 2 venesections in 2 years. My iron count is finally recovering. In the beginning I took my injection at bedtime. Took paracetamol and slept through any symptoms. Yes carry on with your aspirin.
Hi, I have PV and have been on Pegasys for about 3 years. I started at 90mcg weekly, my bloods have been normal for almost 2 years and so I now inject 45mcg only every 3 weeks. I still take aspirin. I get sterile wipes from Boots. The GP gave me a prescription for the Sharps boxes but I have to call the council to dispose of them, which is a bit of a pain. I use EMLA cream on the injection sites (tummy area) 45 min before injecting and that makes it 100% painless and takes the dread away from the self-injection (others find the injection painless but I find it stings a little bit hence using EMLA!). You can get the cream at any pharmacy, over the counter. I have no side effects at my current very low dose. At 90mcg, I had some temporary hair loss/thinning, dehydration tendency, and a very sore mouth - all minor in the scheme of things. Pegasys has been a life saver for me. I hope it works well for you too. Susana x
Hi Emerald, have you spoken to your haematology nurse about this, he/she should be able to demonstrate and help you with the injections and also tell you how you get a sharps box and how to dispose of it when full and wipes and cream etc. Hope it all goes ok for you. Maz
Is Pegasys a chemo drug? There’s a sign up at the gp’s saying anyone who is immuno compromised pls see the receptionist. Is that me now?
Has anyone changed things in their lives to stay healthier after starting pegasys.
Thanks!!
Hi Emeraldpv
I started on Peg 16 weeks ago, they bring you in and show you how to do the first jab, then bring you back the following week and make you do the second jab. It’s easy peasy! No pain at all. They give you a sharps box and antiseptic wipes. Then you pick up the prescription and keep it in the fridge. Monday might is my meds night. I have a routine now, home from work, dinner, then 2 paracetamol, spend half hour getting ready for bed, then set up an episode or book, do the jab and take 2 herbal Nytol and into bed nice and early, less than an hour later it’s a blissful nights sleep through any side effects. I actually look forward to Monday nights now, I treat myself well and get a mega sleep which is always a good thing!
Pick up a box of assorted plasters with the little round ones, they’re ideal for when you snag yourself removing the needle. Saves any little blood stains on clothes.
You will be absolutely grand. The first 2 jabs can offer some weird side effects, like head aches, 3D heart beats and restless legs and a temp but nothing you can’t handle (use of herbal/prescribed sleeping pills for the first couple of jabs is highly recommended)
My platelets have dropped from just under 1.1m to 457 at the last count in just under 4 months and I feel loads better for it...I’m back in 2 weeks for an assessment and maybe an adjustment.
Best of luck and keep us posted!
Kerry 
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