Useful update on Pegasys

[Paul123456]

Of interest to all of us using Interferons or considering their use.

Bottom line is that a subset of users can get significant reduction in progression and remission. There are no obvious reasons why some people get such a good response and others don’t.

ncbi.nlm.nih.gov/pmc/articl...

[mhos61]

Thanks Paul.

[AndyT]

Interesting to see this study of longer term use of interferon. I guess no therapy is without some side effects but if you can tolerate those with ifn it’s still a good option for many of us. Thanks for sharing, Andy

[Rachelthepotter]

Thanks, Paul. Don't think I'd be able to handle the common side effects, so probably not an option for me personally, but very useful to know that a drug has better than expected long term results.

Now, it they can find something that sorts out the fatigue ....

[Paul123456 in reply to Rachelthepotter]

Rachel

I’ve had no side effects, started at 45 mcg weekly and now built up to 75 mcg. I’ve been lucky in that I’ve had a quick haematological response, some can take a while to make a difference. HU appears quicker acting.

Imo Pegasys has much worse side effects if patient starts at too high a dose. Better to start low and slowly increase.

Pegasys appears to be the only drug that can, over time, achieve a degree of molecular remission for a subset of patents. This can extend to reduction of fibrosity in the marrow.

The big debate is what is the significance of this re prognosis.

patientpower.info/video/wha...

My view is that it may not impact the driver mutation but reducing AB might reduce risk of additional mutations. And you would think that anything that might improve fibrosity should improve one’s prognosis, even short term.

No easy choices, nothing risk free. It’s a balance between trying to buy more time (for new treatments) versus drug toxicity. Autoimmune and depression appear to be the principle Interferon related risks.

[Bluetop]

Thanks Paul.

[ihavegotet]

Thanks for posting this. I have been trying to find a long term study on Pegasys since I am on it. My side effects are so minimal at 90 mcg's per week and slowly decreasing my dose further. My allele burden has been reduced by 50% already after 4 months of therapy. Love this drug!