Pegasus : My first injection of Pegasus tomz I’m... - MPN Voice

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Pegasus

Hahag profile image
12 Replies

My first injection of Pegasus tomz I’m so nervous after reading all the side effects

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Hahag profile image
Hahag
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12 Replies
hall2 profile image
hall2

I can understand you being nervous but don't be! I started Pegasys about three months ago on 45mcg fortnightly, now on 90mcg. I didn't have any side effects after first injection and still have nothing or at least nothing I can associate with it. My platelet count has dropped quite a bit. The benefits outweigh any disadvantages. It's also very easy to associate any ache or pain or weird feeling or whatever with drugs when it's probably due to something else. Good luck and let us know how you get on.

JSKly profile image
JSKly

I can remember being worried before the first few injections of Pegasys but as it turned out I have had very little. Over two years I felt the smallest of flu symptoms on two occasions.

I take mine just before bed. I take one paracetamol about 20 mins before injecting.

Twice over the years I’ve bled a bit. I have a non-woven gauze ready if that happens and just apply a bit of pressure for a couple of minutes.

Best wishes.

katiewalsh profile image
katiewalsh

Hi. Just wanted to lend some support during this time that’s frightening you. I’m afraid I know nothing at all about that medication but remember it’s not etched in stone that you have to stay on it. If you have problems your doctor should be able to find a good solution. In the meantime try & relax as much as you can; even if it’s just a little bit. So many of us (maybe all) have been scared and afraid of new medication & do well on it. Remember we’re hear for you. Let us know how it goes. Katie

Paul123456 profile image
Paul123456

I’ve had zero reaction, just start low dose and build up. I started 45 mcg and built up to 120 mcg over 9 months. Now down to 60 mcg because working so well.

Pegasys is the one drug that may slow progression for at least some people. Those advocating it say use as early in the disease as possible to ‘put a lid on it’. It has halved my Allele Burden (% of mutant JAK2)

My pet theory is that Pegasys works much better if you have low inflammation, hence avoid smoking. Also there is increasing evidence that a anti inflammatory diet is very helpful for MPN patients and may unblock Pegasys pathways. (Smoking blocks these pathways)

Best Paul

Wyebird profile image
Wyebird

Good luck

harleydavidson profile image
harleydavidson

Hi Hahag

I was so afraid for my first interferon injection. I think that the fear of the unknown is the worst part. For me it was fine, no side effects. I hope you get on okay. Mel x

Miriammusic profile image
Miriammusic

Hi Hahag,

I was also nervous, but as those who have replied thus far have indicated, it was really for nothing. The injection doesn’t hurt and I have few side effects. I am on 45 mcg weekly. Have been on that for quite some time now. I think the anxiety of not knowing is indeed the worst part. I also think you will be surprised, as I was, at how easy it is. Let us know how you do!!

Miriam

wormwood profile image
wormwood

Hi, I'm on interferon alpha... 4 injections per week, I'm having to change over to pegasys in September due to shortages....

I just wanted to say, the benefits outweigh any side effects, I feel much better now than I did without it!!! Go fir it...

Take care xx

Peak-Moves profile image
Peak-Moves

Hello, good luck! I am supposed to be starting it in the next few weeks too, but seems to be supply issue in my hospital! (Derby, UK)

Hope it goes well and let us know so you can reassure me too, as everyone else has done here.

SuET2017 profile image
SuET2017

I’ve been on Pegasus 90 mcg for about 6 months now after trying all other options with horrible side effects. It has been great. I sometimes get a aches and headache (very slight) a few hours after injecting but if I’m busy I don’t notice it really. I do get a reaction/marks at injection site which stay for about 4-6 weeks, so I inject where my swimming costume covers (I swim regularly).

Oh, and it has worked well in terms of platelets. All my blood levels are in normal range now, first time in 3 years.

Otterfield profile image
Otterfield

Hi Hahag, I have been away and didn't seen your post until today. I am also new to Pegasys. I have now done three injections and have had mild flu like symptoms and aching knees. However, it has not felt that bad. Paracetamol helps and going for a walk eases my knees. I was worried about my knee pain at first but looked up the side effects and found that aching joints is a common one. Best of luck.

Jschwab profile image
Jschwab

I have heard Pegasys can put certain people into remission....

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