Pegasys update.

[Kinsale]

Hi All
Just a quick update regarding my journey with Pegasys as I enter my fifth year on it. As I’ve mentioned before, I’ve had a good journey on Peg, with a small number of side effects (fatigue being the main one) that I have been able to manage quite effectively. I’ve maintained my 90 mcg dosage each injection and have been able to push out the time between injections to 5 weeks. My blood test results have been normal now for close on two years.

Last August and September I went overseas to the uk and Ireland for six weeks. At the time I was injecting monthly and I made a request to Jacqui Jagger who I see at Central Coast Haematology to not take an injection with me and so have a six week gap. I injected the day before flying out and again on the day of my return. The blood test upon my return was normal in all categories.

So I decided that I needed to raise with Jacqui at my next appointment in the first week of January my desire to see what my bone marrow did with a longer 12 week gap between injections. Would my bone marrow freak out and increase platelet production massively thereby putting at risk all that I have achieved over the last 4 years? Or would it do nothing. Jacqui and I had a great discussion regarding this request and the end result was that I would have an eight week gap and that in addition to my normal set of blood tests, we would also test my allele burden.

So my blood test is on Monday and my next appointment with Jacqui is on Wednesday when the results will be revealed. I am very keen to see what my allele burden is as I’ve not had this test before. I don’t know what a good result is - so I’m guessing ( with absolutely no science behind these) under 10% would be very good and under 30% would be a moderately ok result. I’ll keep you posted re what the results are.
Cheers
Mark

[Merry]

That’s exciting news,Mark. Will look forward to hearing the results. Merry

[MPN-MATE Admin]

Hey Mark...

That is all exceptional news, and I too am really looking forward to learning more once your results are all in etc...

Thajnks for Posting this Update, as I am certain that there are many others out there hoping that they too might be able to resemble such feats in due course...

Cheers & yes please, keep us all Posted...

Best wishes

Steve

[KatieB]

Hi Mark,
Delighted to hear your news and hope that it all continues in the same direction. Do keep us all posted.

Sadly my platelets are not so responsive and I have had to increase my weekly dose of peg. Still hoping for good results like you.

All best wishes to you and all our MPNers.
Katie

[Alkemist]

Hi Katie
Sorry to hear your platelets have not responded well to Pegasys, as yet. I have been on Pegasys for over 3 years including almost 2 years on 120mcg/week and it is only recently that my platelets have come into normal range. So hang in there, Katie.
Cheers
Allan

[KatieB]

Hi Allan,
Thank you for your encouraging words.
My platelets did respond originally but started to creep up again slowly. Hence the increase in my dose of Peg.
Great to hear that although it took a long time with you, things are now stable.

Best wishes,
Katie