Pegasys 135

[baggies]

Hi has anybody got any lnformation on pegasys side afects lam on one injection per week thank you

[crapaud]

I initially had Pegasys 2 alpha injections 135 once a week (this was subsequently changed to once a fortnight since it had an adverse effect on my platelet count - I had difficulty keeping above 50) - I had these injections for 9 months. 10 days after each injection I developed  mild itching at the injection site which lasted 4-5 days. At the beginning of the treatment I took 1g of paracetamol the evening of the injection. I personally did not develop any of the other long list of side effects.

Hope all goes well.

Crapaud

[AndyT]

I've been on Pegasys 90mcg since October - initially weekly but gradually reduced the frequency and now once every 3 weeks. No significant side effects -  a bit of dry skin and some mouth ulcers that seem to coincide with injections and last 2-3 days but nothing worse than that. Fingers crossed it seems to be working well for me - hope it's working for you too or does your post mean you're having issues with side effects..? All the best, Andy

[ourlife]

Hi baggies

I am on PEG 135 and inject every 8 to 10 days, I work it to fit in with my life as on some occasions the day after injecting is quite rough, a bit like having a hangover, hot flushes and fatigue however this is improving with time. I have experienced low moods and my tolerance level has reduced, I did not notice this at first my wife noticed the change in me and with help from her and the health phycologist I can recognise  when I need to take time out. It seems I am in the minority when it comes to low moods.

Good luck,

Ourlife

[Hidden]

I was on Pegasys 45mcg for 6 months (reduced to that dosage from 90mcg as platelets dropped satisfactorily after a month).  I took paracetamol at night as instructed and it helped with the flu like symptoms which wore off after 6 weeks - unpleasant but bearable.  Despite alternating the injection site each week I developed a rash across the whole area which was particularly uncomfortable at night but tolerable if using a heavy duty emollient such as Diprobase.  After a month I slowly developed a weird sensation which I can only describe as like a set of Christmas lights going on and off all over my body set at an intermittent setting - over the counter antihistamines had no effect and just when I felt I couldn't stand it any more it stopped completely.  However at about 5 months I started to feel as if I had a chest infection which silently became pneumonia.  I came off Pegasys as a result, but 9 months on I only take aspirin and folic acid and this is after 30 years of 3 other drugs for ET and then post ET myelofibrosis, including way back in the 80s, busulphan.  This may not last, but is a nice holiday from treatment. The chest  side effect apparently is very very rare - I understand most people, with help and family support, can tolerate the other side effects and that Pegasys is so much better than the earlier form of interferon.

[Mazcd Partner MPNVoice]

Hi Baggies, you can read all about side effects in our leaflet mpnvoice.org.uk/documents/t... 

Best wishes, Maz