Horribly sick---Should I blame Avonex?

[essdipity]

This past Monday evening I did my Avonex shot as usual, took a preemptive Aleve and an Ambien, and went to bed. All routine.

Woke Tuesday feeling very tired and out of sorts, but not a big deal. That sometimes happens with the shot. I curtailed my activities, but by afternoon I felt sick enough that I needed to be in bed. That evening I shivered for hours under warm blankets, and then started one of the sickest times of my entire life. I had a splitting headache, mostly in the top front of my head, and extending down into the sinus area. My lower back hurt horribly, I had awful leg pain and transient pain elsewhere. Classic flu symptoms, but no sore throat or coughing.

All day Wednesday I was sick with these symptoms and was miserable. On Thursday I at least had an appetite, but also still had a major headache and leg pain that OTC meds couldn't touch. I knew that a call to someone was in order, and I knew my neuro would only tell me to contact the Avonex people, so I skipped him and called them myself. (More on that negative experience in another post.) I wanted to know whether it is common for side effects to set in after a considerable delay, about 20 hours. Usually mine will start at the 3-hour point if I haven't medicated. Also wanted to know whether others get once-in-a-while whammo effects. Got no decipherable answer to the first question; to the second the nurse said yes, that does happen, but rarely.

Today I feel noticeably better. Only a slight headache, but still off-and-on shimmering pain in my legs, thigh to ankle. This is worrisome, in case it's not Avonex but part of a flare. The other stuff possibly could have been real flu, though I had a flu shot, and besides, I don't think I'd feel better within a few days with that. Don't really know, since I've never had flu.

All this is vastly complicated by the fact that for the past 3 weeks I've had the mother of all allergy attacks. Violent sneezing over and over, plus itching in eyes, nose, ears and throat. (Eating dry toast is good for that last one. It scratches the throat on the way down.) I can't figure what has caused it in mid-winter. Anyway, my ENT, through his nursee practitioner, has me on so many prescription meds it's pathetic, including a 6-day oral steroid taper. I'm just now getting some relief, sneezed only 5 times yesterday.

So I've been generally miserable for weeks, with little energy to get things done. My hand tremors are awful, with my left hand fluttering around on the keyboard as I try to type. My tremors are not part of my MS, according to my neuro, but are "a separate neurolgical disease."

Sorry for all the wordiness, though I guess it is necessary. What I hope forum members will tell me is whether they have ever had a similar experience, especially with Avonex. By that I mean a long delay before side effects, and random terrible effects that last 4 days. I've been on Avonex almost 7 months, and have only had something like this once before. That was right before Christmas and I was on a long drive. It was 5 or 6 hours before I could take an Aleve, but once I did I felt a lot better, and that was that.

I guess it's possible that all of this represents a perfect storm of symptoms for me, with the allergy stuff fuel for the fire. But I'm very afraid of having this experience again, with no warning. I can't live my life or make plans if I never know when I'll be down for the count, yet I can't be sure Avonex is to blame for this attack.

Suggestions and comments gratefully received.

ess

[Heather3418]

I am so sorry to hear that you are feeling so poorly.  As you know, I was on Avonex for three years.  I never had a delayed reaction, like you are having.  It would always be within a few hours of the shot.  Could you have possibly caught a flu bug and it just coincided with your Avonex shot?

This IS something to bring to the attention of your doctor.  Not necessarily the Neuro, but at least to your GP.  They will know whether the Neuro should be called, also.

Boy you've really been going through alot.  Please keep us updated about your phone call to the doctor.  I really think it's necessary dearheart.

Feel better very soon.  Lots of Forum Hugs,
Heather
Earth Mother  

[sllowe]

Hi Essy,

I have the wretched headaches and I believe they are from Rebif, which you know is an interferon too.

I also had the jerky legs during my 1st 5 months of taking it. Being new to MS, I thought it was my MS.

I had to stop injections and was off the med for for approx 8 months.  During that time, my headaches subsided, and my legs subsided slightly (I was thrilled w/slight).

I do believe the headaches for me are here to stay and the jerky legs are probably from my MS. I'm not suggesting taking a break from your meds, just describing how it enabled me to know, what-was-what.

I'm knocking on wood right now, but the 1st five months were actually worse than now - isn't that weird? I started again this past October after an 8 mnth stoppage, and I the side affects are not as bad as before - straaaaaange.....but I'll not complain.

I take naproxen for the headache, and it works for me.  They are 500 mgs and if it's really bad, I'll take a 2nd one an hour or 2 after the 1st.

I feel for you - w/the not knowing.
ttys,
Shell

[doni54]

Hi Ess,

I can't give you in experience with having taken Avonex.  Just wanted to let you know how sorry I am that you are experiencing this.

I hope you feel better soon, I know it's been a rough few months for you.

Take care,
doni

[essdipity]

Thank you guys for all your kindness, as always.

I'll keep bumping this up in hopes that more Avonex or other interferon users will see it and weigh in.

ess

[ChunkyMonkeysMommy]

I had the same effects from Avonex. I discontinued using it after 2 1/2 months of feeling worse than I did without it. I just decided that the possible benefits weren't worth being sick ALL the time. I, like you, was just so sore, stiff, and nauseous that I ended up just lying in bed shivering and aching. It usually lasted 2-3 days, by the fourth day, I was just so exhausted from feeling so bad that I just slept. Then, just my luck, I'd end up with a migraine every couple of weeks at least, if not every week. That set me back for another 2-3 days. I'd end up spending almost a whole week in bed and just start feeling halfway better by Saturday afternoon, just in time to get another shot on Sunday. My doctor wants me to try Copaxone now, but I'm breastfeeding and I'm not really ready to stop, nor is he ready.

[flowerfloosey]

makes me so weary of starting dmd's. Feeling sick all the time with the flu ..is it worse than my legs slipping away for good? It is a toss up???????

[Lulu54]

Ess, I'm so sorry to hear you have all these questions.  Why can't this MS and treatments be clearly defined as to what is and isn't involved?  :-)  

You know too that you have to stay open to the possiblity that you really had a virus of some sort and that has made your symptoms flare.  

This is way too complicated of a disease - wouldn't it be better if it was simple and predictable?

Sorry too that I can't be of help with the Avonex angle because I take copax.  

feel better, Lu

[Quixotic1]

Being that this is an unusual thing for you, I think you had a viral syndrome.  they don't all have upper respiratory symptoms with them.  I have had many times in my life - out of the clear blue - that I had the headaches, shaking chills, aches and such and after 3 to 7 days it went away and I never had a clue.  When I was younger I had at least one a year.

If I had been on Avonex I would have likely blamed it.  But, You are putting the interferon in and it is readily absorbed into the body.  There would be no good explanation for a delayed reaction.  If it was a viral syndrome then a flare following makes sense.

So, I think Lulu came up with the most plausible explanation.

Common things are common and viruses are more common than an unexplained delayed reaction to Avonex.

Flower - The vast majority of us, including ess, do not feel like we have the flu all the time.  I, for one, have some muscle aching and stiffness which is fairly minor for about 16 hours.  I take the shot about 8pm so that is until about noon the next morning.  I rarely wake up before noon, so I sleep through the whole reaction part, lol.  For me, "flu-like" is FAR too strong a way to describe the way I feel.

I would encourage you not to assume you will have the worst possible reaction and defeat the med before you give it a try.  If you did end up having a prolonged reaction, then you would stop that med (with the blessings of your doctor), as no one would put up with that.  About whether it is worth having no use of your legs - that is something you should ask people who have no use of their legs, like Carol (Grannyhotwheels).  

Quix

[essdipity]

These replies are all helpful. And no, I don't usually feel like I have the flu, from Avonex or anything else.

It's strange, but I hardly ever get viruses, or "things going around." I once went 9 years without getting a cold, but usually I get one every year or two. As a kid I had many years of perfect attendance at school. I don't mean to imply that as an adult I don't get sick, but I tend to get my own weird stuff, that's emphatically NOT going around. Like a prolonged allergy attack in January.

But still, yes, this could have been viral. I dismissed flu since I've had the shot, but natch there are other viruses. And I was rundown and feeling awful for weeks anyway.

I emailed my neuro about this, and he has replied that he has not seen delayed or just occasional bad reactions to Avonex. He wants me to report in after the next shot. I'll be watching things carefully, of course, and hoping for the best. I'm already allergic to Copaxone, so I need Avonex.

ess

[GrannyJo6]

Hi! I'm an Avonex user, too and have never had such a bad or delayed reaction. However, this past spring and summer I woke twice to fever and chills, headache, body aches, all the flu like symptoms, but they weren't after the shot. I kept waiting for more symptoms - coughing, etc., but nothing materialized and it only lasted about 24 hours. I think they call it a Fever of Unknown Origin. Came and went. Just wierd! I rarely have problems with the Avonex - once in awhile out of the blue I will have a headache the next day, but I try to remember to take two Advil with my meds in the a.m. and that usually does the trick. Hope you never have a repeat! Does sound like an isolated and wierd viral event. Our bodies are so complex!

[flowerfloosey]

Thank you all for your comments. I just couldn't imagine feeling sick all the time and I have read about the possible reactions to all the dmd's.

In reading Dr Kantors remarks about the possibility of having ms without the pos mri's, it makes me hit a brick wall again. From what I have read it is only a 3-4% possibility of ms but what if you fall into that 3-4 %? Staying in limboland and loosing the use of your legs is so disheartening because you know something is causing it. I used to be able to do so much and was so active. I hate going anywhere with my friends cause they treat me like an old lady cause I can't walk. Guess I am a little depressed thinking of going to Mayo Clinic and coming home without a dx. Like my first neuro said..YOUR SPINAL FLUID IS NOT NORMAL..what could be causing all of this if everything has been ruled out and my disability if progressing??

For about a year, I have just let this go..deciding if God wanted me to know my dx..he would find a way to tell me. I stopped going to doctors except my pcp and just rested my brain from searching searching searching for the answers. Little by little my legs have gone from slight weakness to much weakness, inlcuding my arms, jaw, and neck.

I hate to put all my faith in the Mayo Clinic and there is a real possibility that I still will come home without a dx. Sorry for all the venting!
Thanks for listening.
Flowerfloosey

[amyhue]

I have only been on the Avonex for a month and a half.  It kicks my butt for about 24 hours.   Pain in every muscle in my body down to my fingertips.  Shivering/shaking.  Like clockwork,  I get pain three to four days after the shot in the injected muscle.  It feels like I severely pulled the muscle.  Hard to exercise.   I also have  headaches and muscle aches pop up during the week.  I know it's the Avonex, because nothing else feels quite like it.  Advil helps, but losing a day and a half of my life each week really stinks.   I wonder if this stuff is doing any good. The chronic pain on the left side of my body has not changed.  My balance is a little better.