Awful reaction to second injection of avonex

[Ihb7337]

Had my second injection of avonex (only half a dose) and injected at 5/530pm on saturday night. Had premedicated with Tylenol and oxy ( can't take NSAIDs except aspirin) and made it through till about 3 am. Chills with teeth chattering started, nasty migraine, and strange excessive thirst!? Got up to get meds and something to drink, forgot blanket for chills, and went back to bed. Still freezing since I forgot the blanket . Did not want to wake husband so laid there with teeth chattering until he got up about an hour later ( couldn't make myself get up for blanket.....just couldn't do it!) got warmed up and eventually fell asleep.

Up at about 9am and throughout the entire day, felt so off balance, almost like being drunk! Had not taken any more oxy and, besides, oxy doesn't do that to me. I have taken it off and on since 2005, so my body is really used to it. Just could not maintain my balance. Had to lean on things, while talking to anyone, otherwise I would have fallen down.

So that was my main reaction this time. I don't seem to get muscle aches. I do get a migraine each time I've injected, I really get fits of being so chilled, and now this unbalanced feeling is horrible. I was absolutely useless on Sunday . We have a horse farm and there was no way I could have helped with walking a horse or helping with an injured horse in this condition!

Anyone have similar reactions?? If this continues, I'm not going to be able to continue this med. I have to be able to do my job ( helping with the horses) . But then I think, if I don't take the med and start to deteriorate because of the illness, then I won't be able to do my job because of the illness!!?? Just kind of ******* no matter what I do!?! Thanks for listening.

[Ihb7337]

Note to administrators of this site

sorry I used an inappropriate descriptive word for the way I was feeling. Will think of something better (maybe less descriptive ha?) next time. And thanks for monitoring site. Has to be a thankless job usually!!

[Daisy Dead Petals]

Since you asked I also had a terrible reaction to the second partial injection of avonex. My experience was different, it included an almost catatonic paralysis with terrible thirst and an overheated burning core temperature. I would not continue use after that nightmare.

[techie]

Hydration?

Did you drink extra water during the day before your shot?
I found if I were super hydrated before my shot things went better.
I always put the number of tylenol pills I could take out by my bed when I lay down and a bottle of water too.
techie

[Nanobaby]

As another patient who is constantly working with horses (and other animals), I hear you!

You might want to try and see if injecting earlier or later may help - that's what I've been playing with. And as someone else mentioned - hydrate, hydrate, hydrate. Drink plenty of water the day before and the day of, and the day afterward.

I know others who are on here that take Avonex recommend high protein meal beforehand, not sure what the reasoning is but I know it's helped a lot of people.

Hope your injection this week won't be followed with crappy symptoms! Will keep you in my prayers!

[TLC_31]

I’m sorry your second injection didn’t go well. From my personal experience that was much like yours (although I didn’t titrate), and from others’ accounts, the side effects are the roughest in the early shots. I hope the same proves true for you and that this phase passes quickly.

As others said, hydrate! It’s worth emphasizing anytime, but especially with your reference to “strange excessive thirst.”

I’ll also add, don’t just premedicate, pre-premedicate. Get some Tylenol in your system a few hours ahead of time. (Maybe oxy too, but I know nothing about that med so I don’t want to address it.) And then if you keep a schedule like last Saturday, which I think is a good schedule, medicate again immediately before you go to bed (assuming that’s 9-10 p.m.).

You might ask your neurologist if extending your titration schedule would be feasible. And don’t be afraid to wake up your husband!

P.S.: Hydrate!

[BigA]

For me, it got better each 3 months at a time but it's only after 2 years that I have almost no flu-like symptoms as they call them. I can say it was worth it now, but it was definatly hard. At first, I lost the weekend, then one day, then 1/2 day, then just the evening. Now, I can forget I took the shot in the morning.

I think I am a bad case, you may have better luck - but the first two months are the hardest.

Also, you have to work out what time is best for you. I've tried all different times. For me, as early in the morning as possible is best. Then I go shopping, to the gym and have my regular saturday. If i need to lie down, it's ok since it's saturday.

I've tried night time shots 2x and I had a terrible night both times.

Figure out what works for you.

[Ihb7337]

Thanks to all for responses

Thank you everyone! The support on this site is really a wonderful thing! Sharing experiences, offering suggestions, and so on

And your common theme.....hydrate!! That is one thing that I am really bad at doing. I hate our tap water and should just have bottled water on hand but of course I don't . Coca cola is my beverage of choice but I know I have to become a water lover!!

So thank you my friends. Will see how this Saturday's injection goes, with better hydration!!

[Ihb7337]

Just did third inject at 7pm tonight. It's 1030 now and we will see what happens

Did third inject (avonex) 3/4 dose tonight. Will see how this night goes. So far only slight headache. Going to bed now since I might be up in a few hours (or not...that would be cool)

[Ihb7337]

Third avonex injection

did third injection at 7pm last night. Same old side effects. Headache got worse ( needed imitrex and oxy), chills were nasty, loaded up with three quilts! And muscle aches were really bad last night and today. Lost the entire day. Rested, got up to use the toilet, had a few cigs, then back to bed. And it was such a beautiful day here ( in Wisconsin ).

Now it's 1130pm on Sunday and time to go back to bed. Such a bummer to lose a day and a half, and we are all not even sure if these meds will truly slow down this illness!? Will go through one more injection and re evaluate !!

[BigA]

It gets better - slowly. For me it took months to not lose my weekends. But it does get better.

Dump the ciggies. No sense worrying about whether a drug is helping when you're taking one that's sure to harm

[bbelaine]

I get achey, tired, about 12 hours post injection. Not really too bad. I do drink a lot of water, take tylenol, before hand, 4-5 hours afterwards, then another dose if I start to feel off again (just took it again an hour ago). I've been doing it for 4months now and it's never been awful. If I have something special to do, though, I would change my shot schedule by a day or so.

[dpmich]

Did you get the water mug from the nurse trainer at the start of Avonex injections? I did and have to get it back out. I find that in the spring/summer I don't drink enough, period. When I use that mug though, then I know I have enough and it helps alot. It hurts so much worse and the reactions aren't pleasant.

Try taking the injection on Saturday morning, that may help you to disperse the meds though your body naturally through out the day. Sure can't hurt.

Also I found that by the 3 - 4th full dose of Avonex (or betaseron when I was using that) my reactions to the meds got better.

[Justsayyes]

The only way I tolerated Avonex was by taking 10 mg. prednisone 6 hours prior to the shot. Significantly calmed the worst of my side effects, which were fever, muscle aches, chills, headache. Most do this only for the first few months while your body gets used to the med.

The headache really is the one symptom that I can still have problems with if I don't hydrate enough, and I often use an icepack on my head which helps.

Do consult with your doctor if you haven't yet. He may have some good ideas for you.

[Tracelyn]

I have been on avonex for a year now and I had a similar reaction a few weeks ago. We are talking bone chilling cold and shaking so bad. My husband woke up because I was shaking so bad and I could not open up the bottle of Aleve.

I can honestly say that is the first time I have had it that bad, but I do a bit of pre-medicating before I take it. I take my Aleve, my zanaflex, and my tegratol. When I wake up for the first potty stop (drink tons of water) I take another round of Aleve.

I will say however, that as time goes by, with the exception of a few weeks ago the symptoms get better.

On a side note, I have found that if I eat a high protein meal before I take my shot I do so much better.