Had my first results after two months at 45 mcg weekly, increased to 60 mcg last couple of weeks since 45 mcg was only giving me about 5 days symptom relief. The 60 mcg gave me the full week.
No side effects.
Today’s bloods great compared to a month ago, WBC down from 11.5 to 6.5, Neutrophils down from 9.6 to 5.5, Platelets down from about 550 to 420. RBC still high and unchanged at 6.3.
As I think we all know, there is no one drug that suits everyone. Pegasys/Interferon really split opinions into those who swear by it and those who suffer unpleasant side effects. So far I’m delighted with it. As others have said, anyone starting Pegasys should, if possible, try a low dose and increase as necessary. Need to build up tolerance.
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Paul123456
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Steve, yes Pruritus and Restless Leg. Possibly dry eyes which have cleared up since starting Peg but that maybe change in weather related (ie less central heating) but I believe the Peg responsible.
Re Pruritus, I’m actively researching how this is impacted by diet. Got one working theory and will post next week if it doesn’t crash and burn on test!
Having a cure for Pruritus would make you a local hero I am absolutely certain...
I rarely suffer from it these days (since being on Ruxolitinib), but sometimes it does remerge but is not as extreme as it once was on Interferon Alpha.
I shall patiently await your findings with great curiosity of course...
That’s great news Paul! I’m starting Pegasys on Friday 45mcg. It’s my first time on anything other than aspirin. My platelets are sitting at 1078. My Doc is starting me on a Friday to give me the weekend to get over any ‘flu like’ symptoms before work on Monday. Did you get an initial hit of illness when you started Peg? I’ve started taking 200mcg of B12 to help combat the fatigue...anything else I should prepare for?
I did the same and massive anti climax! Wondered if I’d managed to inject the cat by mistake. Whole family were watching me waiting for the dreaded side effects. The experts I’ve seen (via Presentations) seem to work off maybe 25 - 30% discontinuing before end of first year because of side effects. However this must include Interferon (less well tolerated) and be dose dependent. Some will be on 180 mcg per week.
Pete - I’m weekly
Steve - no miracle cure but I’m thinking it may be aggravated by eating too many foods high in histamines. My previous ‘miracle cure theories’ have all crashed spectacularly so don’t hold your breath.
Very pleased to hear that it is working and that you have no side effects. As I understand it the full benefits take time to build up, so 2 months in, they sound like good results. Keep us updated.
I love reading all of your posts, you are undoubtedly one of the most informed persons on this forum, and thank you for keeping us all informed of advances in treatments.
I have a question for you. I have read on the US based MPN Research Foundation a post from a Medicare beneficiary (which I also am but not on meds just yet) that they are having trouble getting meds covered by their drug plan and that prescription plans will not cover meds such as Pegasys for mpn's because they are not approved by our FDA for use on mpn's and so here you have to pay full price for these drugs in US. So they are used off label. I have found the price for Pegasys here to be from 5000 to 8000 US dollars per month for Pegasys and 10,000 per month for Jakafi. I know that I could not afford that for very long so when that time comes I assume I will simply be put out to pasture to pass along. My question is: I think I have read on mpn voice that persons with a diagnosis of cancer who are on the UK national health service get all of their prescriptions for free. Is this true, do persons in the UK qualify for free Pegasys and Jakafi if you have a diagnosis of cancer which all mpn's now are?
Thanks. It hinges on your Local Healthcare. Some offer Pegasys but some only offer the cheaper Interferon version. Your post goes to show why our NHS so great versus Medicare. And why it’s always underfunded!
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