Flu "like" symptoms

mamana monster said...
Hi all! I have a question, that most likely will differ for each of you, about the "flu like symptoms" you can get with Avonex treatments. I had my first injection yesterday at the doc's office (about 10:00AM) and about 4 1/2 hours later started with a fever of about 101 that later went up to 103 before I could get enough Advil in me to slow it down. Oh my gosh! Someone please tell me that this is just an isolated incident... I have never been a person that would run a high fever, not even as a child, never much over 100 so this was quite a shock to say the least. I took Claritin and Advil prior to the injection as my neurologist suggested but by 5:00PM I was a sick puppy, (also I've heard taking the injections at bedtime will be helpful). I ended up taking 6 Advil and 2 Tylenol before I could get it down to 101.4, which at that point felt good! Ha! I'm hoping that the first dose is the worst?? Or do ya'll think this is something I can expect once a week? Better this morning fever down to about 100...argh!

Thanks for your help and for letting me whine!

 

Unfortunately the "flu-like" symptoms you describe do come with each shot, at least for the first few months. It sounds like they were "right on time" -- about 4 hours after you injected.

I don't know what the Claritin was supposed to do, though.  I do know that doctors and the Avonex (and Betaseron) folks suggest taking Advil.  If that doesn't work for you, you might try ibuprofen, aspirin, exedrin, or some other fever reducer. Not all of them work well for everyone.

Yes, doing the injection right before you go to bed does help -- you'll generally sleep through the worst of the symptoms.

Here's what I did (and still do, 15 years later): Take two ibuprofen (I use generic over-the-counter pills) about a half hour before injecting. Then inject.  Put two and a glass of water by my bedside -- so that if I wake up in the middle of the night with fever and chills, I can take those without having to stumble out of bed.  Then two more in the morning upon waking  --

and generally I was OK.  Now, 15 years later I just take the two at night before injecting, and rarely any more either during the night or the next day (I've stopped bothering with the pills at my bedside...)

I found the symptoms were particularly onerous for the first 2-3 months, then lessened significantly.  Don't be surprised, though, if you find that when you get sick with a cold or the "real" flu that they'll come back and be troublesome again, for a shot or two.  Or if for some reason you stop taking the Avonex and then start up again, you'll go through this all over again.

I hope the side effects aren't SO bad that you stop using the drug, though!

Cat - Thanks for the info...wow...I don't know how I feel about having a 103 fever every week. I woke this morning and don't have a fever, had a low grade one all day yesterday about 100, and I was still pretty stiff and sore in the old joints. Geez, it will take me two days to feel better? I seriously hope that it won't be that bad every time, even if it lets up after 2-3 months that's still a long time knowing you are going to be that sick every week.  

Lil Kimmie - I guess I don't know what a full dosage is, color me uninformed at this point, still trying to learn all the ins and outs. I did look up dosing when we decided on the medication and it stated that there is basically one standard dose for Avonex 30mcg. Do you know if that is a full dose? I need to ask my doctor that question, I feel kinda silly that I don't know that answer.

Honestly, If you guys on Betaseron get this sick every other day, you are far tougher than me right now. I guess I will get a bit tougher over the next few weeks, what doesn't kill you will make you stronger kinda attitude. Of course my son will inform me that's not really true! Ha! Always good to have moral support!!

Blessings

 

Yes i do believe they usually do lower hun. My cousin is on avonex and at first thought that i would be, she warned me of the "first shot" that id feel like i was dying from pneumonia , so that's all she said about that (forrest gump lol), i imagine it is different for everyone , uppity's explanation probably fits the guidelines.

But usually avonex does taper down and my cousin is totally used to it without any problems from it now. Some may continually experience some mild temps , others more, some less. Id give it a few more tries for sure. I really think next time will be bothersome but a LOT less than this time.


Risk vs Benefit is the way to view this. Thankfully your on this 1 time a week , Im in no way suggesting they type of side effects you experienced is ok once a week (no thanks lol), but I am saying that it should ease some and ibuprofen seems to be the most helpful from the majority of whom ive spoken to. Try that and let us know how this next shot goes. Ms is a tough disease and it can let up but sometimes doesn't, this medicine deal more than likely will . I'll be thinking of you on shot day..i pray it goes much easier!

Everyone is so different its such a hard thing as you see from all of our comments to be concrete on. I think you will do much better with even the next shot and even better after that.


Risk vs Benefit and you do want to fight Ms back!!

thanks

kiera

Kiera said...
Ok ms. uppity i have you cornered now (kidding), Im still wondering why im on copaxone. When i asked the doctors at the clinic they said we use it all the time! The trouble im having in understanding it is that they also say im r and r ms. Which when i read articles suggest that interfuron's are stronger? For lack of a better word?

I thought and have read that copaxone was for ppms and sec ms?...i didnt know it was for r and r , or are they bluffing me? lol

I guess im feeling bad for mamana and want some of that flu (giddy mood tonight). Seriously though, since my attacks seem to be so frequent should i bother asking my neuro or just keep with the copaxone. Its not broke its just not working? Or at least i cant tell any difference.


I did get the 4" bed topper (memory foam) and will try that out tonight.

thanks

kiera

Put down that keyboard and step away from the corner!! We Cats get CRANKY when cornered!!! :)

Copaxone is a very good drug, and indeed is used for people labeled relapsing-remitting. And ALSO for people with secondary-progressive (as are some of the interferons..maybe all, but I know that Betaseron is).  I didn't know that it was being used for primary-progressive..I don't think any of the interferons are...but I don't know for sure.

Copaxone is the "newest kid on the block" and is different from Avonex, Betaseron and Rebif in that Copaxone is NOT an interferon.  The first three seem to differ from each other only in the means of "distribution" in the body...once a week, every other day, or (I think) daily...(I think Rebif is a daily injection, but don't hold me to that.)

My personal opinion --and it's only that, a personal opinion, based on the reading I'm doing -- is that of the interferons, Betaseron is stronger. Maybe that's what you'd heard about Betaseron.  But note: of the interferons, not of all the drugs in general.

When Copaxone came along, lots of people switched to it because they didn't want to continue dealing with the side effects. Lots of doctors prescribed it for their newly-diagnosed patients as being "better" because of the fewer side effects.  And some doctors believe it is the better option too, in large part because of the side effects.

I think doctors often prescribe any of these drugs not so much because one is "better" than another, but more often because the doctor is "used to" one over the other, and/or has more patients on one than another, so more often prescribes it.

Are you certain that you're "having more attacks"?  You do understand that many symptoms don't go away entirely...that some stuff like numbness, tingling, strange sensory stuff, difficulty walking, lots of things...don't "disappear" when the MS goes into remission?  That a new "attack" (or exacerbation) is characterized by clearly defined NEW symptoms, or severe increase of "old" symptoms, that lasts from days to weeks?  A lot of the residual stuff will always be with you, and might seem to flare up from time to time, sometimes during the course of the day..

like my burning and tingling feet seem more "pronounced" at the end of the day, and I'm much less able to transfer (my legs are significantly weaker) at night...but that doesn't "count" as an attack.

If indeed you ARE experiencing more attacks, you really do want to talk with your doctor. Not all the drugs work the same for everyone, and you might do better on one of the interferons.

But first you might want to get through the sleep study and see what comes of that, before adding on or switching meds.

I actually inject Betaseron every other day (not 3x week). Maybe the newer recommendation is 3X week? Anyway...otherwise what you posted, Gretchen, is how I understand that, too.

As for the antibodies and what they mean with the interferons..I think "the jury is still out" with that, too...meaning some docs seem convinced that if their patient develops the antibodies (which is discovered, I guess, through blood testing) that the patient needs to go off that drug. Others aren't so convinced there is a problem.

I guess that's why they call it "practicing" medicine. Maybe one of these days they'll get it right!! :)

manama monster-
I'm sorry your first dose was a horrible experience for you. I have been on Avonex since September (or October- I can't remember) of 2006. I can tell you that from my experience, the very first dose was really, really bad. But it does get better. they other shots werent as bad as the first, it gradually gets better. some weeks, as long as i keep taking tylonol or advil(sometimes both) I hardly have any side effects and some weeks I have mild ones, mainly headaches and body aches. but nothing like the I did at the beginning. So hang in there.

Hi,

I'm brand new to the forum but have been on Avonex since November, after my diagnosis. My symptoms after the first injection were the same as yours and took 3 months to lessen. What made them more manageable was this:

2 ibuprofen prior to injection
2 more ibuprofen, 2 tylenol and 1 atarax one hour after injection and then 2 ibuprofen round the clock for 24 hours. The atarax is an antihistamine (you could use benadryl) which can help keep your body from reacting so much to the injection.

It sounds like a lot but it's the only thing that worked and it took weeks of trial and error. The tylenol was the only thing that would bring the fever down and the ibuprofen is the only thing that helps with the body pain. Also, I do my injection around 9 or 10 pm.

I had almost three months of being in bed the whole day after my shot but am so happy to be able to say that I can now get up and take care of my kids the morning after my injection!

I hope your body adjusts quickly to the avonex!

natabelaknits

D'awesome said...
Hello, I'm reading this post with fascination as the meds are something I expect I'm going to have to deal with soon. Can anyone recommend good reading on these? I want to know what I'm dealing with before I accept the dr's recommendation. I've heard conflicting reports from friends with a daughter with MS who say stay away from any interferon meds as long as possible, and then I think but if they're doing what you guys say they'll do it might be worth trying. However, doesn't Interferon mess with the liver alot? I'd just like a really good source for medication regimen's or to understand the different meds individually so I can apply them to myself individually when my dr and I have to come to that point.

Thank you all for sharing any tips and info. I suspect I have very little clue what I'm embarking on now.

The best place to start with any of the meds is at their website. Get the "story" about what THEY claim, then ask your doctor which HE recommends...then come back here (or to other MS sites) and ask this very question!

Avonex, Betaseron, and Rebif are interferons. And yes, they can affect your liver...but not necessarily! Generally your doctor will run blood tests every 3 months or so for the first couple of years to check..and if there isn't any damage indicated, then it's advised to run tests every year or so, at your annual physical.  I've been on Betaseron for more than 15 years, without any problems at all.

But now there IS a choice -- Copaxone is NOT an interferon, has minimal side effects, and might be a good option for you, too.  It's newer than the others, and has shown great promise.

forgive me if I repeat anything...I don't have enough time to read all the responses!! I take avonex and yes the flu symptoms can be with every shot or you can eventually grow out of them. Most people have them for the first few shots and then they go away. Then there are people like me....2 years later I still get sick! Here are a few tips. Take the advil b4 the shot, like an hour. Take your shot right before bed so you sleep through the worst of it. Don't get the premixed stuff, get the other stuff they say it has less side effects. not for me..... but for some. good luck!

Ok I just read everybody and i was totally repetitive. I guess I want to say- don't give up! It sucks but give it some time, it gets easier and you get better at dealing with it. I (secretly) look forward to shot night now b/c everyone uts me slack. My mom watches my daughter for the day, my husband caters to me and I get to watch a movie in bed! I'm always trying to find the upside ans this is definitely an upside!!!

D'awesome said...
Tkelly, I think that is the newest approach I'm learning most... the upside to it all! :) Thank you all for sharing the info... I've always been very tough about my pain and really have a very high pain threshold (I'm not bragging, it's fact, almost harmfully, which come to think of it might not be a threshold, but an actual affect, hmmm I'm typing out loud now)... but I tend to think of trying to avoid the drugs so I've got to figure out why I want to start the regimen to begin with and what it's going to do for me now... if I can hold out til I absolutely have to, is that better? Or is it better to begin now?

I know my dr will be advising alot of course but he's very attentive to my wishes and allows me my will as much as is practical... like my Topamax for the migraines. I get depressed and weepy on 100mg so I cut it back, he didn't think I should so I kicked it back up to 75mg daily, and got weepy again, so I cut back to 50mg and put my foot down with him and he said ok, so now we know. I appreciate that about him cos he recognizes that everyone is different and our bodies react differently to all different meds.

So everyone's input is wonderful, thank you all!

With the MS disease-modifying drugs -- Avonex, Betaseron, Rebif, Copaxone -- it is NOT a good idea to "hold out til (you) absolutely have to". They are designed to slow the progression of the disease, maybe stop it....and MS continues to progress, often unseen, in your brain and nervous system.  Lesions can (and often do) form without creating any outward signs, until you suddenly enter into a large and potentially very debilitating exacerbation (or flare), which can leave you significantly impaired.

They'll not treat any current symptoms, to be sure...but maybe stop new symptoms from occurring..a VERY good thing.  But yes, there are individual differences, people find one drug more suitable than another, and maybe more effective...

but doctors also encourage people to stay on the drug they choose for at least 9 months to a year, before switching. It takes that long for there to be any pattern of events to tell whether the drug is effective or not.

The GOOD news is that you DO have a choice!  When I and some others here were diagnosed 25 years ago (or more!), there was NO choice, no drugs, and we had to endure increasing disability..never a good thing.