This Is MS Multiple Sclerosis Community: Knowledge & Support

Two hours after my first injection, I received my first reaction to the med. The shakes. People would call them the "chills", but I experience something much more dramatic, like I was an unbalanced clothes washer on the spin cycle. I also had a headache and was achy but that may have been attributed to the shakes. Has anyone else had the same experience?

Sure, I've had the shakes. That's why I take it right before bedtime. Over time, the shakes went away but I do get chills when the temperature is cold. Hang in there and don't write it off yet.

Hey Wilson...

I am giggling a bit while I type this (nice that I can look back and laugh now, eh?)...I VIVIDLY remember giving myself my first avonex shot.

I shook like CRAZY before the shot (well, my hands always shake, but I was scared!), and despite taking medication I still had the WORST migraine of my life...and chills and sweats, I had to change the sheets during the night.

I am sure a good portion of this was due to my anxiety b/c of the whole ordeal (I was terrified I would hit a vein and end up with an air bubble in me resulting in death ~ can you say VERY active imagination and paranoia blended smoothly together), but the sweats and chills and headaches never went away. I also had stomach cramping, diarrhoea, and I cried...I needed therapy I am sure.

I know we are to avoid stress, but jabbing a needle into my thigh certainly did not help me in that area....but since I am giggling (almost a full guffaw laugh now ) again, I can truthfully say it does get better. Your body will adjust somewhat, and so will your mind...

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< March 20, 2004 = I want my life back *sigh*
> March 20, 2004 = ...day one on alertec = getting my life back? *grin*

Wilson, it does get better.

FYI, I take mine at night too and the first time got the shakes so bad I wondered if I was having a seizure. Two ibuprofen at bedtime and ibuprofen and water beside the bed for when I wake up. It took me at least 3 weeks to figure that out.

It took me about a month to sleep through the night. Now, I did get some Avonex directly into a vein just last week (at least I think that's what happened, since blood spurted across the room when I withdrew the needle). That was new.

But, it also gave me the seizure like shakes in the middle of the night and I couldn't figure out what was happening since that hadn't happened in a while. Eventually I did tho and took ibuprofen. People told me it was because I got some med right into the vein.

Some days after the shot I still sort of feel like a Mack truck got me. I'm into the 4th month with this stuff. Don't give up early...

Take care

Sharon

For all those replied to the article "whole lota shaking goin on" I just want to say "Thanks!". I did my second injection Sunday, and the side effects did let up a little this time. I didnt shake quite as much. I still felt very achy but it dissipated by the next night.
Sleeping is almost non existent on the night of the shot and my poor dog doesnt get much sleep either because of all my tossing and turning.

Uhm, yes, I do let my dog sleep with me at the bottom of the bed. Ever since my ds in February, I have allowed him to sleep with me. He is my security blanket. Someday, I am hoping to better. I am curious, though. Since I now have baggage, do you think that there are people out there that will overlook the MS and marry you anyway?

Perhaps I should post this question in the future.

Cheers

Yes, Wilson. You can still find love. My husband has psoriasis and psoriatic arthritis. If you don't know what those are, psoriasis is a skin condition, also considered autoimmune, in which the person gets red patches, called plaques, where the skin grows too fast. In his case, more than 30% of his body was covered in plaques when I met him. He also is one of the the lucky 10% who gets a form of arthritis with his psoriasis. He has had good and bad times with it since before I knew him and certainly during. He gets a lot of help now from Enbrel--a drug he injects himself with once a week.

He's my soulmate. And it never occurred to me for even a second not to marry him. That was almost seven years ago. And guess what. About six months ago, I found out I have MS. So I guess we're soulmates in more ways than either of us ever imagined. I joke that, since I haven't started Avonex yet but intend to soon, we will soon be a two-needle household. And to look at us, you'd never know anything was going on (pray, let's keep it that way).

In any event, that's my long-winded way of saying you can find love, regardless of what ails you. The right person is the right person, regardless. Just concentrate now on taking care of yourself and feeling your best.

And be looking for a note from me soon asking for your encouragement as I take my first trip down Avonex Avenue.

Just a comment, Love never looks at baggage. Love looks at the person and what they can be, not what they have been or where they came from, and when you find the individual that is yours, "baggage" will be in the background, not in the picture.

And as for the "shakes" after over 4 years on Avonex, I am down to only having them about 10-15% of the time. The other days I just deal with the headaches and fatigue.

Ibuprofen is the best I have found to cope with them.

Best of all - my wife has suported me for over 32 years and the "baggage" would take a freight car if we looked at it.

I have used Avonex for a lot of years. For what it is worth, the BEST drug I have ever used to counteract the side effects is ALEVE. 2 Aleve, not Advil, not Tylenol, but Aleve and I am golden. ALSO - I went off Avonex and went to Copaxone and now I am back. Some things have changed. Leave the Avonex OUT of the refrig for 24 hours before taking. Yeah, I know, it may sound wierd, but my side effects (flu, shakes, freezing) went away.

I just had to pipe in here because I hate side effects - and these 2 things virtually eliminated them. Aleve is my very good friend now. Just don't take too many - 2 at the time of shot and maybe 1 the next day then wait for next week.

I'm not sure what the advantage might be here. It only takes about 30 minutes or so to warm the water vial to room temperature in the dried Avonex package. Once it has warmed up, I can't see why leaving it out at room temperature for such a long time would provide increased benefit unless the medication was actually starting to break down. Another option might be to put the water vial in a zip lock sandwich baggie and leave it under your arm for about 10 minutes before mixing the water with the dried Avonex. That should warm it up just great.

NHE

Yeah, it is funny - I couldn't see the advanatage of leaving it out either -- it didn't make sense. BUT - it works. The doctor (Nationally renown one, by the way alerted me to it and he has seen very positive results. The bottom line: The drug CAN be stored outside that long - much longer in fact - so why not give it a whirl? The added side benefit for me is it serves as a reminder to take it - travel is now less stressful and oh yea, it works!

Wow. That's interesting and a bit concerning to me as well, given that Biogen's own site says not to leave it out for more than 12 hours:

Q: How long are prefilled syringes of AVONEX stable at room temperature?

A: Once removed from the refrigerator, prefilled syringes of AVONEX should be used within 12 hours.

This is in the FAQ section:

<shortened url>

How did your doc come to determine it was ok to leave it unrefrigerated for so long? Is there any research he/she can provide the rest of us? I'm not skeptical but I would like to know that if this does indeed help, it's not because the medication is breaking down from being unrefrigerated.

I think that you might be confusing the two different forms of Avonex. The above statement is true for the prefilled syringes. However, the maximum time that the powdered form can be left out is 30 days as long as it's left unmixed with the sterile water and at 25°C.

This information is from the doctors prescribing information linked to on this page.

NHE

I definitely was confusing the two.

BTW, I just took my first Avonex injection two hours ago. Feel very tired, but felt very tired before--I'm recovering from a bad bug that's been haunting me for the last week.

The needle itself didn't hurt at all, I mean, nothing. But I did feel a strange sensation when it entered the muscle, like a second piercing of a membrane that, I must admit, made me a teency bit queasy, probably more due to psychological impact than physical. Anyone else experience that?

What you're describing sounds pretty normal in my experience. I usually feel a little discomfort when injecting the solution into the muscle. It goes away pretty quickly though. The important thing that I've found is to keep your leg muscle relaxed. I once had mine do an involuntary contraction when it had the needle in it. It's a painful experience I don't wish to repeat.

You'll likely feel pretty miserable, especially the day after your first injection. I've found that ibuprofen works much better than Tylenol in counteracting the side effects. Of course, we're all a little different so use what works for you.

NHE

I have been useing Avonex for 6 years now. When I first started your symptoms sounded just like mine. The [person who quoted use Aleve [sp] is right on.

Nothing else seems to work. Take it easy the next day. Lay around and do nothing and take your Aleve [sp] every 12 hours before the side effects start again. Not just when you take the shot, but the next day also.

Trust me it does get better. Sometime now I even forget to take a med before or after the shot and nothing happens. The next day I am perfectly fine.

It take awhile for your body to get used to the shot. In my case it only took about 3 months.

Good luck and God bless........Kim