First Injection of Avonex

I took my first Avonex injection today.  I am pretty miserable tonight.  I did all of the prep......lots of water, tylenol....... The shot part was very easy. Really no pain at all.  The effects of the Avonex started to set in about two hours after the shot.  
I wanted to take it right before bed but the visiting nurse had to be here to watch me give myself the first shot.  So I took it around 1pm.  
I HOPE these symptoms become less with every shot????? YES????  I only took 1/2  dose this time.  I am to take 1/2 next week and then the full dose the following week. So, I am still alive! :)

Lee Ann

[kitten o]

HELLO THERE,
SORRY YOU R FEELNG LIKE ****.
I HOPE IT GETS BETTER FOR YOU.
FEEL BETTER  LOT'S OF HUGS.
KITT

[Quixotic1]

Well, everyone's experience is different.  The first shot will be like that because you take it early in the day.  I found that my side effects appeared at about 4 hours, so I try to take about 2 hours before bed.  Then when I wake up in the night to pee (the hydration) I take the Tylenol again.

Can you take Aleve or ibuprofen?  If so, they would be more effective because the have anti-inflammatory effects and the reaction to the Avonex is because of inflammatory chemicals.  I can't take them because I am allergic to them all.  

For me the effects pretty much lasted about a day.  After about 4 months I noticed that I was not feeling them much after the first night.  I also got more stiff after them in the beginning.

Now, 9 months into them, I hardly have a reaction at all.

Quix

[gooddays]

I am sorry you are feeling so miserable.  It will pass.  At the same time, I am glad that you started on Avonex, as it wil delay the progress of the condition and/or the degree of your disabilities due to MS.  

I always have mine on Fridays at 9:00 pm and there are times that nothing happens, but there are times that the side effects start about two hours after the shot.  I usually take Tylenol and it helps.

Your body is just getting used to the medication and because it is something that just started, it gives the side effects that you are having now.  The Biogen crew will get in contact, if they have not done it by now, you may ask them a better time to take your shot or how to deal with your side effects.

I hope it does not last very long.  Give your body time to get used to it and hopefully you will feel better your next time around.

Feel free to ask any question you may think I could help you with.

Hope you get well in a jiffy and take good care of yourself.

Zulma (Gooddays)

[LATW]

Kitten- Thank you.  I think I will be better in the morning.

Quix- I have had problems with Asprin in the past. I don't think it is a true allergy but I get an increase in my heart rate with anti-imflammitory meds and ringing in my ears gets worse with Asprin.  

Zulma- Thanks.  I ACHE!  I feel like I have been hit by a truck!

[Heather3418]

It's a shame that you had to take your first shot in the middle of the day.  The side effects coming on about two hours after the shot, sounds normal.  Starting out with half th dose, I think is a good idea.

Quix is right, if you can take Aleve than that would probably do more for the side effects.  If I take Aleve for anything, I always take two pills to start with, if I am really in some pain.  I will then take one more tablet 12 hours later.  Aleve bothers my stomach alittle, so I can't take it often.

I use to take Avonex, but am now on Copaxone.  I hate the thoughts of a daily shot, but I truly believe that it's already working for me.  Considering that my father died 6 weeks ago, my better half's step-mother two weeks ago, had the stomach virus twice AND had a fever blister...i would have assumed on past expeience that I would be in the middle of a huge flair-up right now.  I am only having mild flair-up symptoms.  Could it be the Copaxone?  I don't know....I am just glad that it seems I have avoided a flair-up disaster for right now.

You may want to consider taking a luke warm bath about an hour after you take your shot, at night.  Maybe some candles around the tub and some soft music, to relax you and put you in the mood to get a restful nights sleep.  Just a suggestion.  It certainly can't hurt.  ANYTHING to try and make your shot night a more pleasant experience.

Hang in there Lee Ann...you may truly be one of those people who side-effects disappear after a few months.  It DOES happen.  I will pray that it does.  I understand the feelings of being run over by a truck, so do as quix suggests, if you can take it...Aleve....  We are hoping for the best, with each shot that you take dearheart.  We are here for you...don't forget...

Big HUGS....but gentle hugs...You are on your way to taking an active role in slowing down this MS Monster....Congratulations girlfriend...you took the first step.

Heather  

[LATW]

Thanks so much.  I am feeling better this morning, but more tired than normal.  Do you know much about Aleve?  Is it asprin related?  I have had really bad exprences with anti imflammitories.  My heart kicks in and gets going way too fast.  I am wondering if Aleve has that kind of effect on the heart.

I had a bit of an increase in my heart rate with Avonex yesterday.  It is like I drank too much caffeine.  Very uncomfortable because it makes my entire body feel very nervous. I avoid everything with caffeine.

It would be great to find another pain reliever that works better than Tylenol.  


LA

[essdipity]

Hi there. I'm glad you've started on the Avonex. Did you talk to the nurse who came about how to lessen the effects? If not, please call the Avonex people, and tell them you have trouble with anti-inflammatories, and see what they suggest. All the drug companies have reps on call for just this kind of question.

Good luck.

ess

[tanky]

Congrats that you took the first shot!!!!  It is a big accomplishment.  I started on Avonex in December and the first 24 hours were miserable - cold sweats, shakes, aching from head to toe.  Now, its barely noticeable.  I hope you have the same reaction.  And I agree that it helps to correlate the shot with something pleasurable like a warm bath or doing something else you really enjoy that is relaxing.  I wish you the best!  

[LATW]

hello,
That is a good idea. I should give them a call. I am doing better today, but have to take another shot next friday............for the rest of my life??  I have wondered about that.  How long....is this forever?

LA

[essdipity]

It's forever, at least till they come up with something better. Supposedly the meds are being developed in pill form, but I have no idea when that will be a reality.

Anybody?

ess

[Jazzyfizzle]

Just wanted to send some cyber thoughts for you gal and hope the side effects lessen for you.


Jazz

[LATW]

Hello,
It is Monday and I am finally feeling better.  I am woozy from the Trileptal, but other than that I am ok.  
I am trying to comprehend doing this shot once a week and feeling like crud every weekend for the rest of my life.  Ugh.  And I have not even taken the full dose yet.  

LA

[Heather3418]

Some notice that their flu-like side effects start to disppear as time goes on.  Don't give up on the Avnoex yet.  Quix is on Avonex.  She may be the one to give you some advice .  She has been on it for many months and I believe she said that her side effects are starting to dimniish.  It really is a good drug and works very well at controlling relapses and brain atrophy.  

Please try to hang in there and maybe you want to ask Quix how she is doing, now that she is several months into her treatment.  She has been pretty busy composing some information that will be posted permanently on the first page of MS Forum, so don't know if she will see this and be able to reply right away.  She has been swamped.

Best Wishes LA and have a GREAT DAY.  Glad you are feeling better.

Heather

[Patti66]

I'm sorry you're feeling bad, and I hate to say it, but I NEVER got used to Avonex, and I was on it for something like 13 years.  Every week, about 6 hours after doing the shot, I started to get sick and I stayed quite ill for the whole next day and night.  They finally took me off of it, and I found out that it must have been doing something positive, as now, I'm starting to fall apart a little bit.  If you can, just stick it out, as they say most people get used to it.  I wasn't one of them, but hopefully you will be.  Good luck!

[LATW]

Thanks Heather and Patti66. If I know I will have a few good days during the week maybe I will be able to deal with it.  At least if I can sleep through the worst part.  I had to take my injection around 1pm this past week and I was wiped out for the evening.  My body hurt so bad!
Today is better though. The weather is awful and I think that is making it a little more difficult to feel very good though. They are calling for 8 inches of snow tonight.  Yuck! We have had enough already!  At least we are in our last week of February.

I go for my t-spine MRI on Friday.  I thought I might age a little more gracefully that this!! :(  

Hey, at least I smell good!! Some guy walked behind me yesterday at Wal Mart and said "is that Eternity?"  I was looking at some drapes so it took me a second to realize he was talking to me. I turned and said "Yes"  I wear Eternity perfume.  He said, I LOVE that smell.  He went about his business and pulled a curtain rod off the rack. As he walked away he said "Thanks for smelling good!"  HA!! I got a kick out of that!! I also thanked God for His sense of humor and knowing just what I need!!  
I know I still look the same on the outside, but I am not feeling quite the same in my heart.  Since my hysterctomy this fall and now MS this winter, well, I feel like some things are being ripped away from me, and I am NOT ready for that to happen.  :(



LA

[Heather3418]

Give yourself some time to make all the adjustments that have been going on with your body in the last few months.  Heck it takes a least a year to start feeling your old self again after a hysterectomy.  At least that's the way it was for me.  Now dealing with MS and Avonex, your plate is full.

Keep wearing that gorgeous perfume and feel good about yourself.  Spring is on it's way.  The time of re-birth and renewal.  Now that's something to be excited about....

Have a GREAT EVENING!
Heather

[pins_n_needles]

Curious how the Avonex has worked out for you. Have your side effects gotten any better? I finally saw an MS specialist for 2nd opinion and he recommends I start Avonex but I am hesitant. My neuro said MS YES, the specialist says MS MAYBE, CIS YES. I have had my head stuck in the sand for 2 months now. Time to wake up and smell the coffee (er, Avonex?). But am scared to commit to the drugs because of the potential side effects. It's been a while since I've posted, but I value what y'all have to say so much.

[LATW]

I will be taking my 10th injection this week.  I think things have gone well over all.  The side effects are yucky.  I do have flu-like symptoms.  The fatigue does last a few days.

My MS doctor wants me to give the Avonex 3 full months to see how I adjust.  I have the advil and hydration worked out and it seems to be working out ok.  I started with Tylenol but that was not enough.  Advil and Tylenol combination is working out better. And drinking enough water. I take the injection late at night and sleep, as much as I can, through the diffuclt stuff.....sweating, headache....

I do have terrible body aching and sharp pains.  All you can do is give it a try and for sure tirate it up to the full dose.  I decided if I didn't have an allergic reaction to it then I'd stick it out as long as I could.  

I am considering asking my doctor is maybe predisone might help for the day of my injection.  I have been told it helps a lot with the side effects.  let me know what you decide to do.

If you start a DMD you will find a lot of support and help here!


LA

[thiagirl]

I take my 18th shot this thrusday night, They started me with 1/4 of a dose and then 1/2 then 3/4 dose for two weeks then the full dose  it took about a month and a week until I got the full dose, and it worked out really well. I must be one of the lucky ones because the side effects are not to bad I wake up achy and i take an advil and by about noon on friday I feel o.k I do feel tired over the weekend nothing to bad but if I run around with my kids i am tired by night time. I try to take mine between 7:30- 8 p.m because if i take it to late the side effects last longer in the morning. I take an advil an hour before the shot and two tylenol p.m at about 9;30 so I sleep through the worst of it. The worst part is I haven't been able to give myself the shot my husband gives them to me. If I had to do it over I would have gave myself the first shot at the dr. office but because I am a diabetic I didn't think I would have a problem giving myself a needle, that turned out not to be the case. Thank God for my husband. It seems like most people tend to feel that the side effects get less over time. so I would encourage you to try it.

Good luck ,
God Bless,
Cindi

[TLC_31]

I've taken Avonex every Friday since March 2004. Every body certainly will react differently, and I do know someone simliar to Patti66 above who had to stop. However, the side effects have been manageable for me, they have become less noticeable with time, and I'd encourage you to attack this disease with everything at your disposal.

For the first few weeks, I'd have night chills, bad headaches, the entire gamut of "flu-like symptoms," and I'd be worn out on Saturdays, even with a regiment of Tylenol/acetomenophin. Even after the worst passed, and maybe even a couple times in the last year or two (usually a gloomy Oregon winter weekend), I might have said the side effects were worse than the disease. I'd like to think that's because I've forgotten how bad a relapse can be.

I also suffer from emotional/mental side effects that Tylenol can't help; I've never completely warmed to the idea of giving myself the shot, and it can take a few extra minutes to muster up the courage. However, these days, the "flu-like symptoms" are not a big deal, especially when Saturday is going to be sunny and I have something planned.

Has the Avonex worked? Impossible to know. But I've been for steroid infusions only twice since diagnosis, and both were after fairly stressful (although positive) life events.

[thiagirl]

I also suffer form the emotional/mental side effects, its been three months and it is rare that i don't cry before I have to take the shot.  and I have yet to inject myself, my poor husband has to put up with me. The shot is not bad and afterwards I feel silly for getting upset but the idea of him giving it to me gets me upset. I would rather be the one injecting but now I am such a big chicken about it. I know if I had to I would since I have been giving myself insulin for 12 years now, but I have gotten comfortable with him doing it.

[LATW]

I also have the emotional side effects and so glad you brought this up!  I thought it was just me.  

I think mine are a combination of grief and anger at having MS and side effects of Avonex.  I  no longer have the world by the tail and that is a difficult thing to deal with.



LA

[TLC_31]

Biogen has a nurse/counselor call me and check in every couple of months, and actually I could call her (or her co-workers) anytime, so those of you who are on Avonex may want to make sure you're on their list. It's just someone that you can talk to about the side effects -- whether grief and anger or physical -- that you might find to be a comfort to you. I'm sure the other drug companies have similar things. They all want to keep us hooked to their brand.

Biogen also sent a nurse to instruct my first injection, and it's comforting to know that they will provide a training session if I'm getting rusty. I haven't needed that yet, although a couple times I've bought oranges to practice with. I have had smaller mental blocks, where I've sat for an hour or more waiting to gather the courage to inject, maybe even slammed a few doors, and in two of those cases I fell back on my wife to do a leg (she does an arm one out of every three weeks anyway).

I like to inject about 6:30 p.m. so I'm not too tired, and also my wife wouldn't be too tired if I had to fall back on her, and like Cindi "thiagirl" I think it helps lessen the next day's side effects. Also like Cindi described, I can take Tylenol right before I go to bed (in addition to an hour ahead of the injection) and get the most out of the supposed eight hours that the arthritis version lasts.

Anyway, I haven't had more than a couple minutes of hesitation for a couple months now, and even after those instances I always chastise myself for getting worked up about what really wasn't that traumatic.

[pins_n_needles]

Thanks for all of your responses ... I knew I could count on you guys!
The possibility of "feeling like every weekend for the rest of my life" is really weighing heavy on me. Especially since my 2nd opinion doc isn't commiting to definite MS yet. The idea of taking the shots and then finding out a couple of years down the road that it was CIS has kept me from starting. It was easier when I had a clear cut diagnosis from my first doc! I know I should be relieved that I have some sort of diagnosis and fight this disease with all the tools available to me, but there is always that seed of doubt (or denial).
It's good to read about the experiences of those of you who have been down this road. It helps me wrap my brain around the uncertainty of this disease. Maybe the Avonex will make me feel like crud, maybe it won't. Maybe the side effects will lessen with time, maybe they won't. Maybe I will have another flare up tomorrow, maybe never. The only thing I can be certain of is uncertainty! That's a hard thing for this control freak to handle.

[Heather3418]

Avonex is a GOOD DRUG.  I only had two relapses and milder than before Avonex in the three years that I was on it.  I only had one lesion appear, which was small during that whole three year period.

I was one of the unfortunate ones that could not deal with the flu-like side effects.  I would be down and out for 3-4 days after ever injection, no matter how much I pre-medicated or how I medicated myself afterwards.  So, after 3 years, I finally gave up on Avonex.

Why do I bother to post...not to dwell on the side-effects, but the BENEFITS.  As you can see from what I said, I had minimal relapses and only ONE lesion appear in 3 years of being on the Interferon Beta 1-A.  It IS a good drug.

After stopping Avonex, I went three years without any of the disease modifying drugs.  In the interim, I went from 7 lesions to 12.  So see, I was so stupid for NOT starting on one of the other DMD's.  I am now on Copaxone.  In the three months since I have started it, I lost my father, my son in law almost died from his Lupus, my step-mother stole my whole inheritance and I found out she was sleeping with another man the entire 4 years my father was in a nursing home.  Then to top that off, my life's partner, lost his step-mother and I had the flu TWICE.  You would think that all of this would put me into a major flair-up.  I have only had a mild flair up despite all this stress and illness in my life.  

SO, do I think the Copaxone is working.  You bet I do.  When it's time for my next MRI in six months, we will see exactly what Copaxone has been doing in my brain and spinal cord.  The DMD's work.  Sometimes we have to fight the side-effects, because the cost if too high (in my opinion) to just sit there and do nothing.  These drugs are all we have as of today.  We have to keep our future in our minds, when we have any side-effects from the drugs we have to take, in order to try and slow this "monster" down.  We HAVE TO DO IT.  It's our only hope for the future, until something better comes along.

I wrap my arms around all of you, that brave the side-effects that may come about from taking any of the DMD's.  I also hug all those who cringe before injecting that needle into our bodies for yet another time.  It's no fun, but together we will get through all of this due to the friends we have here, that support us through thick and thin.  And God Bless to our family members that continue to stick by us, to give us so much support.  Three Cheers for our "caretakers."  They deserve alot of credit for what THEY deal with as our spouses, mates or friends.

Gob Bless you all,
Heather

[Heather3418]

Forgive my typos...MedHelp and the Community Leaders are working on an option for us to be able to correct our posts, after they have been posted.  Will let you know if and when this needed feature becomes available.  I am really looking forward to it.  Especially on those days when my brain refuses to cooperate with my fingers...