i am 53 , have ET, Jak2 mutation and it’s s really good news today, 12 months ago my platelets were at 1500, and my consultant advised to start on Pegasys.
I posted on here earlier this year in frustration as the results were limited and very slow. I was encouraged by comments that it could take up to a year to see results.
So today I had my consultation and latest blood results , I have increased my pegasys dose gradually and am currently on 135 twice a week. The Side effects are fairly significant with nausea and bone aching/ flu like pain BUT .,. My platelets have dropped now to 330.
Talking with consultant we have agreed to space out doses a little to every 5 days and monitor closely now to ensure platelets don’t creep up .
I’m posting this to encourage others to stick with it ...and am so very grateful to my consultant for being patient, listening to me and ultimately getting me back within a normal range!
Hopefully I can tackle the side effects and move forward..
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Suebon
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That's great news! Congratulations! That must be such a relief.
I'm just starting on Pegasys, so glad to know about the timeframe for results. Interested to learn if the change in timing helps with side effects. I'm on a very small dose right now as I transition from HU and am having slight nausea, but nothing else. Hope that holds as dose is increased.
Thanks so much for sharing your results and good luck!
I was on Pega for over 2 years with no real change, then it stated to pay dividends, so keep going.... I was on Hydro and Pega and now down to 3 Hydro a week and Pega once a week...
This is great news! Pegasys was slow to act for me too. My platelets were 1200 to start off with and we had to add hydroxy in to kick start things but after 8 months my figures dropped. I have been able to reduce my dose and my numbers are still in the 200’s. Hopefully this will be the case for you to.
Hi Suebon, yes I totally agree in all you've said. I'm on Peg/Interferon 135 following Hydroxy which stopped working, my platelets shot up 2000. It took 18months to get me more stable, platelets now 380. I also get flu like symptoms, nausea & aching muscles.
It's so long since I communicated on here but i am now wondering if you can help me with some information about the continual use of pegasys. In particular, the side effects.
I am inthe enviable position of have (in the words of my prof) normal bloods. as I never see the readings, I'm not certain what that is but he seems very content and I don't get the high blood pressure or other effects of the condition. I am very pleased.
However what I do have are increased side effects, to the extent that I am unable to complete the mpst mundane tasks. Chemo brain, I believe but to such an extent that I have now been signed off work until further notice. I cannot function effectively. I cannot go through the most average procedures that I have carried out for years. My sleep pattern is continually bad and I feel continually deprived of it. I cannot remember the last time I had a good night's sleep without sleep aid, which I try not to take. I stick to just the nights I inject and maybe once in between injections.
I mentioned it to the prof and he commented that I was doing OK before! Well the truth is, I was not but I was tolerating the many (almost all known) side effects. They seem to have increased in intensity and become far less tolerable.
Do you know of any studies that have been done on the long term (life-time) use of Pegasys. It seems impossible to find anything that refers to chemo as anything but short term treatment. In or case, there must be specific effects relating to the fact that we are taking it continually. I'm really feeling it and it's not good. How have you found it? Best regards Penelope
Hi Penelope, really sorry to hear that you are having these symptoms and that you are off work because of them. I asked Prof Harrison about this and she has said that this could be pegasys, side effects don’t always occur at the beginning and that you should definitely get this checked out with your haematologist.
I am not on pegasys, I take Hydroxycarbamide.
I hope you feel better soon, take care of yourself. Best wishes, Maz x
Thank you Maz. I have had a good innings with it so far but it is now unbearable. I go back to him with Prof Harrison's suggestion. All the very best to you and yours. Penelope
I have had great success with Pegasys to treat my PV although it took more than a year to get haematocrit and platelets under control. I was lucky in that I did not have a bad reaction to the medication despite hefty doses. However, after about a year and a half on Pegasys I became increasingly anxious and despondent and was suffering a lot from insomnia. My haematologist explained that anxiety and depression is a common side effect of Pegasys especially over time. He prescribed escitalopram, an anti/depressant, and I was amazed at the difference it made. Within two weeks I was sleeping through the night (for the first time in years!) I also had more energy and altogether just felt more like my old self. I can honestly say I don’t feel like I have a chronic condition.
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