Weekly chills after IFN injection

[Grendall]

Hi all,

I hope everyone is doing as well as can be.

Just a quick question for you all, I have had to recently wean off some other medication in the last couple of weeks (non related) to to my ET, Calr

I have noticed I am suffering the chills the day following my interferon injection. Whilst I have been on other non related meds I have had to increase my injection but for obvious reasons, never felt any side effects as they appear to have masked all side effects for the last 6 months.

I watched an article from a few years ago where a lady on there spoke to Nona about her weekly chills, she gave the injection on the Friday and called it her ‘Saturday night fever’ I remember it was very interesting as when I first started I was the same, over the last couple of weeks I appear to have now gone back there

*******The thing is, I do the right thing, I go to bed wrap up and just try to sleep it off but last night woke in the early hours for the loo to find my body temp must have been so hot, as I started feeling sick and nearly passed out whilst on the loo! It was as though I could feel all the heat leaving my body/skin. I felt that sick I initially laid on the bathroom floor for a few minutes until I came around….

Anyone have such experiences please? TIA

[hunter5582]

What you are describing sounds like rigors, a known adverse effect with Pegasys and other medications. Many adverse effects are dose-dependant. It may be that you are now at a dosing level where you will have issues with tolerance. This is an issue that should be reviewed with your MPN care team.

[Grendall in reply to hunter5582]

thank you Hunter,

I will keep an eye on this then now

[J-fd]

I’ve been offered this drug but not sure wether to take it as don’t want to feel any worse then I already do

[azaelea in reply to J-fd]

I feel the same uncertainty as you. It was discussed at the end of last year that I could change to PEG but I’ve been unsure since and not having had telephone consult with main Haemo Dr. just some stand in it’s been left in abeyance. I’m thinking “ maybe the devil you know” etc. although so many people seem to do so well on Pegasys. If only we knew what side effects we would get. Regards Fran.

[J-fd in reply to azaelea]

I was told the side affects could be depression , liver affected but it’s low chance were a couple more but can’t remember

[azaelea in reply to J-fd]

It’s the depression, shivers ,nausea and fatigue I’ve read about as possible side effects which worry me greatly. I feel depression enough on HU as it is and yet the experience of Mishie14 really gives us great hope. I’m so undecided!

[J-fd in reply to azaelea]

I’m only taking aspirin at the moment and already suffer with terrible fatigue and pain in my bones so I don’t want to take anything that will make me feel anymore worse than I do ; it’s a hard decision isn’t it , you can only try and if side affects then stop it

[Mishie14 in reply to J-fd]

dear J-fd, I am the poster child for adverse side affects of two ET drugs and now for praising peginterferon. Hydroxyurea was the worst with anagrelide coming in second with the same but less severe side effects. Both caused extreme fatigue, brain fog, significant pain off and on in bones and joints, loss of appetite and sense of taste, and significantly increased liver enzymes that sent me to a liver disorder clinic. Anagrelide introduced cardio side effects that scared me the worst. Quality of life was awful. My hematologist finally prescribe peginterferon. I say 'finally' because she is not as experienced an MPN specialist and was not keen on prescribing it earlier in my journey. Taking it for nearly 3 months has helped her and her nursing staff to learn a lot more about this drug in a real world case. I have given them reference articles from this web site. Also helped them to understand what causes false high potassium in blood tests and how to avoid it--a totally new topic for them. I started peginterferon on March 1 this year. I took low dose 45 mcg every other week and in late April same dose but frequency changed to weekly. My platelets are coming down and the only side effect has been a painless, single small hard red spot on shin caused by inflammation proven caused by the peginterferon. That's it for side effects. I expected nausea a while after injection but that has not materialized. My doctor gave me anti-nausea pills to have on hand just in case. Changing drugs is not trivial. This drug is also the most expensive by far of the 3 I've taken. I have not had issues getting it covered by Medicare in US. You will read frequently here about each one of us being different. That is so true. For me, switching to peginterferon was a necessary step that has turned out to be a game changer. Good luck to you whatever direction you choose. Stay safe!

[Mirror368]

What dose of Pegasys? Maybe you need a lower dose?

[Exeter21]

yes I had same problem. However I experimented as I felt it’s down to fact that at night you are just sleeping no excercise no fluids to help . So I started injecting mornings drinking plenty going a walk & getting on with a normal day instead of building myself up for the chill day 🙈

Amazingly it has worked I don’t notice anything now . A bit cold for an hour after but gone after lots of water & a walk . I will stick with mornings for injection 👍. Try it …👌. Also maybe speak to your MPN on doseage as I am now on 45 or 50 depending on blood results 👍

[Grendall in reply to Exeter21]

thank you I will definitely give this a go. When I first started it was given to me in the afternoon at the hospital and I was told to slowly make it more towards teatime going forward, I started injecting at 6pm and have done since, my chills appear to be 24hours after…

[Exeter21 in reply to Grendall]

yes I spoke to Haemotology & they said it was up to me the time of day to choose 👍