Really struggling on pegasys

[Rastavapa]

Hi everyone I have been on peg for around three months and have slowly had them increased every visit to guys I am now on 180 ug per week and my counts have still not moved I have been taken off Hu now after nearly twenty years on it as it has stopped being an effective treatment, I am not sure if I can handle another increase as the side effects are getting unbearable I have severe headaches and leg pains but the worse is the mental problems I feel so low it's really affecting me now half the time I don't know if it's the meds or the condition that's causing me to have no energy, I feel useless to my family atm and that just makes me feel worse.

I just not sure what to do as I have tried anagrelide and that did not agree with me either, the doctor said if it does not start working then they would introduce another drug in combination but I am not sure what drug, my mind is a complete mess right now and I just not sure what to do.

[mhos61]

Hi Rastavapa,

I ‘m sorry to hear that you’re having a bit of a battle with interferon treatment. It seems as though a few people have suffered similarly. I am on HU so can’t offer any constructive advice.

The good thing is you’re a patient at Guys so you will obviously be being monitored well and treated appropriately. I suppose three months might be considered early days. Hopefully, with time, dose titration or another drug added your ET will become controlled again and your heavy symptom burden will disapate.

Are your medical team aware of your low mood? If not, maybe you could have a chat with the specialist nurse.

I hope things improve for you soon.

Mary x

[Rastavapa in reply to mhos61]

Thanks for getting back to me, I did tell the doctor when I went on Monday and he has booked me to see a psychiatrist although not sure if it will help with chemically induced depression or not I hope so or that it gets better over time.

[Rachelthepotter]

Hi Rastavapa

So sorry to hear you have depression. It’s a notorious side effect of pegasys and interferons generally. It’s exactly the same mechanism that makes you feel low when you have flu. But more so. And its awful. Has anyone suggested rux? Maybe that’s the additional drug. There are some trials going on of pegaysys plus other things. Me, I have stayed away from pegasys because I had bad post natal depression after the birth of my son, and I got depressed on HU. So I reckon I have a vulnerability to depression and I don't underestimate it.

Rather than/ while you are waiting for a psychiatric consultation , there is a self referral psychology service at the Dimbleby centre, part of the new Cancer centre at Guys, that may be quicker. And you could also ask for a second opinion within the team as to your medical treatment- nothing to loose.

All the best

Rachel x