2nd dose of interferon : l have awful flu like... - MPN Voice

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2nd dose of interferon

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l have awful flu like symptoms, headache and migraine a week following my first Pegasys injection also ceased Hydroxycarbamide on the same day. 2nd injection this Thursday. These symptoms are not uncommon apparently for Pegasys interferon but apart from paracetamol any other suggestions would be most helpful.

Adiewon

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28 Replies
Grendall profile image
Grendall

hi Adiewon

Just rest and make your injections in the evening. It will get better over the coming weeks, hope you go on ok x

in reply toGrendall

Hi Grendall thanks love, very good advice

Adiewon

CGRed profile image
CGRed

HI Adiewon, I'm 9 weeks into my weekly 90mcg Pegasys injections. 1st 3 weeks I took them on Thursday mornings but it left me tired and nauseous. I now take the injection on a Friday night and go to bed with paracetemol to sleep off any after effects.

I'm getting on better now bar occasional nausea, the flu like symptoms that come from nowhere, and a distinct ongoing lack of appetite.

Hopefully in the coming weeks your body will adjust to it.

in reply toCGRed

Hi CGRed really helpful to know things can improve with interferon, do you inject yourself,hopefully my nurse will show me again on Thursday and l can take it in the evening. But gosh the side effects are challenging, but lm praying they will reduce with time.

Thank you buddy.

Adiewon

CGRed profile image
CGRed

HI again, I injected myself on the 3rd occasion after initial concerns about doing it myself. I was more than happy that the injection wasn't as hard to do myself as I had thought it would be.

The side effects are odd and hard to predict. The nausea I get may actually be partly to do with hunger as there are some days I have no appetite at all.

The flu like symptoms can come and be gone shortly or a few hours later.

I have experienced itching though more than I had experienced previously but when it's particularly annoying I take an aspirin.

I think the key for me is to inject late at night and by morning I feel reasonably fine.

in reply toCGRed

HI CGRed most helpful l agree the side effects are most odd,physical and emotional,l aim to inject myself after this second shot.

Adiewon

william-Indo profile image
william-Indo in reply toCGRed

hi CGRer,

You could warm the tube with your palm for a while then slowly push out the air by press the injection. You may see the liquid goes up to the needle then do the injection.

Kindest regards

in reply towilliam-Indo

Thanks William-Indo just setting it up will be keeping an eye on the numbers.

Adiewon

MNGIRL2019 profile image
MNGIRL2019

hi there,

My doctor started me on the lowest dose: 45 mcg and we are waiting a month to see if my numbers shift before moving to a higher dose. Thankfully, no symptoms yet. I hope things improve for you soon.

in reply toMNGIRL2019

HI MNGirl lm also on the lower dose yes numbers are important for me also,l will try to plough on l just hope the symptoms w settle down. How long have you been taking Pegusus and did you take Hydroxy beforehand?.

Adiewon

MNGIRL2019 profile image
MNGIRL2019 in reply to

I’ve never tried Hydroxy before. I’m in childbearing years still so they don’t recommend that route.

Wyebird profile image
Wyebird

take your injection and paracetamol early evening then go to bed.

I used to call it the 5-2 diet. Didn’t eat for two days. The side affects lessen with every injection. Unfortunately so did the 5-2 diet.

I didn’t have migraine for a week just a headache. Good luck.

Hopetohelp profile image
Hopetohelp

Sorry you hear you are experiencing side effects. Hopefully they will improve as your body gets used to it. Drink loads of water leading upto and during and after

in reply toHopetohelp

HI Hope to help. I will drink plenty of water

Thank you

Adiewon

HI Wyebird yes fuzzy head is awful l cant think well or have a reasonable conversation with anyone and lm so emotional about everything. Your right best place for me is a quite bedroom with nighttime paracetamol.

I found your advice reassuring and helpful .

Thank you

Adiewon

ciye profile image
ciye

I can only echo what others have said inject in the evening and try to make the following day a rest one. Hopefully you side effects will lesson over the next few weeks.

in reply tociye

Hi ciye that's great thank you for your kind response.

Adiewon

JeniMac profile image
JeniMac

I felt rough for first 2. I took my 4th last night and feel OK today. Someone suggested taking out of fridge and give half an hour to take chill out. Hope you feel better soon and it works for you 💛

Exeter21 profile image
Exeter21

I had same after 1st dose of Peg but now after 3rd ok. I inject about 9pm take Paracetamol go to bed lots of water especially on waking & now ok. Had horrendous headaches at beginning as guess the body gets shocked by a new arrival in its system . But also drink loads of water & green tea which has helped combat it . I had to come off Hydroxy due to numerous reactions plus bad heads . Hopefully your body will adjust after each injection . Started only on 45 measure at present as my body pretty sensitive to anything 👍

in reply toExeter21

Hi Exeter21 thank you.

Threelions profile image
Threelions

Hi

Over 3 years now for me on interferon. You will very quickly get used to the side effects you mention. You’ll also get used to the best way to combat them.

Been said already but drink water or squash…….and lots of it. More than you would ever think you’d need to drink😀

Paracetamol always works best for me but I guess you could try similar alternatives to see if any are better for you.

People have said the symptoms are odd & there is no better way to describe them👍Being odd & not something we’re used to means that in time you will get used to them…..in a similar way to how we would deal with a common cold etc. They are generally short lived symptoms which is a plus.

I’ve got so used to the regularity of the symptoms that I know what’s coming, how best to deal with them & how long they’ll last for me. With that familiarity comes an increased confidence in in living with regular interferon.

In a nutshell I think, as time goes on you’ll nail it with regard to what’s best for you & also get much more used to the side effects.

Thanks for sharing & let us know how you get on 👍

in reply toThreelions

HI Threelions yes lots of changes poor body feeling wobbly your feedback is reassuring though. It will be a bit of a rough tough time initially but lm feeling more confident now so fingers and toes crossed . Thanks

Adiewon

CGRed profile image
CGRed

Many thanks to all contributing replies to this thread. The issue with injections for me was mainly psychological but once I injected the 1st time and didn't actually feel the needle I have been at ease with it since.

The experience re: headaches i also useful to know. These were bad for me the first three weeks when I injected on a Thursday morning but since I've started injecting on Friday nights I haven't experienced any bad episodes.

Before I started on Interferon I was also suffering with pretty much continuous mouth ulcers / canker sores. These have eased off significantly the last 4-5 weeks thankfully.

I see more positives than negatives to the injections so far.

in reply toCGRed

Thank you your reply is so helpful lm so glad you mentioned the psychological effects, sometimes this emcan be overlooked so thank you for this.

Adiewon

LadyAbash profile image
LadyAbash

Hi,

I agree with what has already been said by others. When I started Pegasys Interferon, I did my injections in the morning. After a couple of months, at my first reviews, my haematology team told me to try taking it in the evenings because I was so lethargic, nauseous and had headaches. Since changing the time of my injection, I have no issues. I actually sleep well after my injection, which I now do fortnightly instead of weekly. You will get used to it and your symptoms will subside.

All the best

LadyAbash

in reply toLadyAbash

Thank you kindly l will aim to take the second injection tomorrow evening, any tips about administering...

LadyAbash profile image
LadyAbash

I just pinch the part of my belly to be injected then inject. I try to inject a different part of my midriff each time. After doing it a few times you don't feel it.

All the best

LadyA

in reply toLadyAbash

Thank you so helpful.

Adiewon

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