1st Pegysus injection went really well - MPN Voice

MPN Voice

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1st Pegysus injection went really well

Hopetohelp profile image
25 Replies

Just wanted to say to you great guys out there that I had my first Pegysus injection under supervision of nurse last week and it went really well with no major side effects ( touch wood). I know not all can tolerate the drug but for those considering it so far so good and it was a lot easier than I expected

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Hopetohelp profile image
Hopetohelp
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25 Replies
Poppy6060 profile image
Poppy6060

Hi Hopetohelp that is good news your injection went well and you had no side effects let’s hope it continues and it works well for your PV .Best wishes Poppy

Hopetohelp profile image
Hopetohelp in reply to Poppy6060

Thank you so much Poppy

hunter5582 profile image
hunter5582

Good news!!

I may be soon joining you in the PEG-IFN club so glad to hear a favorable response.

All the best and hope to good fortune continues (also touching wood).

Hopetohelp profile image
Hopetohelp in reply to hunter5582

Thank you and will keep all posted hoping results improve too. Good luck

JP1952 profile image
JP1952

Well done. This is very encouraging. I am also hoping to join the PEG-IFN club very soon.

Hopetohelp profile image
Hopetohelp in reply to JP1952

Good luck and let us know how you get on

Mustang50 profile image
Mustang50

That’s fab news! I’ve only been on them six weeks I was very anxious how I was going to react and how I was going to be able to inject my self, but now it’s just part of my weekly routine and carrying on with life, good luck and best wishes!

Hopetohelp profile image
Hopetohelp in reply to Mustang50

Great to hear. I was so surprised that I couldn’t feel the injection at all

Mustang50 profile image
Mustang50 in reply to Hopetohelp

Yes me too I went hammer & tong at the first injection 😂😂 my face was a picture to think I had managed it I had to ask the nurse was I in lol good luck!

Hopetohelp profile image
Hopetohelp in reply to Mustang50

Ha ha I know what you mean 😂😅

EleanorPV profile image
EleanorPV

Well done you. Starting a new journey usually brings anxiety. I suppose I could call myself an old timer. I started Pegasys in 2016. I remember the concern I experienced (especially Though the first few months). From experience remember Pegasys is a slow acting drug and can take more than a year to see full benefits.

Hopetohelp profile image
Hopetohelp in reply to EleanorPV

Thank you EleanorPV. So very true. The anxiety leading up to the jab and the whole thing is greater than actually just getting on with it and then I thank my lucky stars that all ok. I actually think I feel better already and have made it to bed without falling asleep on the settee for the past 2 nights but some of that may be psychological. I told my body that we were going to receive medicine that was going to help and that we need to welcome it and not be frightened of it. May sound a bit mad but hopefully it’s working. I won’t expect too much with my next blood test and thanks for your good advice. So nice to hear that you have been on Pegysus for a few years and doing well

EleanorPV profile image
EleanorPV in reply to Hopetohelp

I also had a similar psychological discussion with myself. I do believe our mind and body need to have a good connection. On average I sleep very well on the night I take my injection.

Hopetohelp profile image
Hopetohelp in reply to EleanorPV

Preparing our body it’s coming helps I am sure. I took my injection at 10.30 in the morning as that is when the nurse was free. I drank loads of water and weed a lot and had no reaction. Felt like I had a couple of glasses of wine the next morning but not a hangover. Was planning to take it at night but think I will stick to morning for now so I can drink lots. Do you feel ok the next morning after taking it?

EleanorPV profile image
EleanorPV in reply to Hopetohelp

I always felt fine the morning after injecting Pegasys. But remember every drug works differently on each of our bodies.

Hopetohelp profile image
Hopetohelp in reply to EleanorPV

Yes very true

hunter5582 profile image
hunter5582 in reply to Hopetohelp

That does not sound mad at all. The mind-body connection is quite real. It is often overlooked, which is unfortunate because it is so powerful.

Hope things continue to go well.

Hopetohelp profile image
Hopetohelp in reply to hunter5582

More powerful than we sometimes realise and thank you

Planti profile image
Planti

So happy to hear you have started and it is going well. Absolutely true about acceptance of a treatment being a huge factor in doing well on it.

My MPN specialist concurred with the observed slow action of Pegasys, so she has me sticking with the low start up dose for now which is very tolerable.

Sending more happy thoughts your way!

Hopetohelp profile image
Hopetohelp in reply to Planti

Thank you Planti. Hope you can remain on a low dose and your next figures are good. Am prepared to ask to stay on low dose if they want to ramp me up as yes slow acting

Planti profile image
Planti in reply to Hopetohelp

All we can do is advocate for what we think is the best. Guided by science and steered with hope and an open mind or something like that.....

JT_Marlin profile image
JT_Marlin

Welcome to the club! Ive been on it at 45mcg for over a year. The original plan was to slowly go up to 180 but all my blood numbers came back and stabilized in range so we’ve just kept it here.

Hopetohelp profile image
Hopetohelp in reply to JT_Marlin

Fantastic news and sooo encouraging

Belgobrit72 profile image
Belgobrit72

Good to hear as talking to consultant about changing over in the nearish future

Hopetohelp profile image
Hopetohelp in reply to Belgobrit72

Good luck and let us know how you get on

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