Change from Interferon to Pegasys : At last my... - MPN Voice

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Change from Interferon to Pegasys

swimswam profile image
10 Replies

At last my trust has approved the change from basic Interferon to Pegasys. I have only been allowed standard Interferon for the past year, but the last few months my platlets have risen from 350 to nearly 700, and I have had to increase my injections to every other day. My heamo wants me to start Pegasys on 135mg weekly, but I am worried at how high this dose is compared to others on here. I thought it was recommended to start at a low dose and increase, but would this apply in my case as I’m already used to basic interferon. He seems convinced that I should start straight away at 135 mg to try and control my platlets. Must admit I’m really grateful to only have to inject once a week, but quite nervous of the dosage as I know what Interferon side effects can be like. Any thoughts would be welcomed.

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swimswam
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mhos61 profile image
mhos61

Hope someone can advise you on this. From the posts I’ve read on here, it would seem starting low is the way to go.

Anyway, I would like to congratulate you on managing to switch to Pegasys. I know it’s not easy to access in our part of the country without a bit of a battle.

Mary

socrates_8 profile image
socrates_8

Hey Swimswam... :-)

Sounds like you might first need to assist trying to keep your platelets in check...

After a short settling-in period, any side-effects might normalise, and you might even then be able to reduce the dose if need be... (?)

But keeping your platelets under control is important too...

No doubting once a week injections will be preferable too... ;-)

Keep us posted & best wishes

Steve

Martini54 profile image
Martini54

Hi, My platelets were over 1300, I am on 45mg pegasys a week and they have come down to 400. I hope this helps.

EleanorPV profile image
EleanorPV

It’s up to you what you inject. This is a conversation to have with your consultant. As you know interferon is slow acting but your body is already use to it. As long as 135mcg is a similar equivalent dose (from memory, I think, the units are different for interferon) of interferon then your symptoms should be less with pegasys. Remember all our body’s are individual. I’ve been injecting pegasys for 3 years now. I battle keeping my platelets out of the low zone, sigh.

AndyT profile image
AndyT

Given you’ve already been on regular interferon 135mcg may be OK for you - perhaps try that and if it gives you side effects reduce to 90 next time?

The start low routine tends to apply to those who’ve never had interferon before.

Hope it works well for you - it’s been a great treatment for me and no significant side effects

JackLina profile image
JackLina

When I started on Pegasys my haema told me I should have 180mcg. Because i had already done a lot of research into the drug, my age and condition, I suggested 45mcg. He said that wouldn't make any difference at all but let me do it....eventually.

I began in June 2018.

Within three weeks, my platelets were in normal range and continued to reduce. From once a week I was changed to every 10 days and now, for a couple of months, every 14.

I have never used any more than 45mcg.

My next appointment is on Dec. 19th. and I'm hoping my bloods are as good as they have been.

I hope you do as well as I have on Pegasys. I have suffered many side effects but it has been well worth it. All the best Penelope

Wyebird profile image
Wyebird

Although I don’t have any experience regarding the meds you are talking about I’m thrilled your trust have approved the new one fo you.

swimswam profile image
swimswam

Thanks for all your thoughts and advice. I think I’ll give the full dose a try, and hopefully get my platlets down. I’m back at heamo in 6 weeks so maybe he’ll agree to lowering the dose then. I’ll just be glad for it to work, at the moment I feel though I’m injecting numerous times a week for nothing. It’s been a battle to get Peg, (although my heamo wanted to prescribe it a year ago) so I’m grateful to be able to try it.

Threelions profile image
Threelions

Hopefully you’ll be ok. I wanted to start on 45 and go up if needed but consultant said start at 90. Not really had many side effects, just very mild and manageable aches for 24 hrs after injecting. Platelets down so that’s the main thing,

I do get the impression that consultants really rate this drug.

At least you won’t waste any at your doseage. At about £500 or so an injection your certainly getting your moneys worth 😀

I started on 180mg with very few problems, was able to cope with the side effects, over 18 months reduced down to 90, took over a year before platelets were fully under control.

Lynn

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