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Any Advice Or Experience On Avonex?
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Any Advice Or Experience On Avonex?

The Cleveland Clinic Doctor Wants to start me on Avonex in the next couple of weeks and follow me here in Cleveland from now on. She feels that all of my problems are either MS or various meds that the doctors have given me in the past. No Sjogren's etc. ? Wow

I was on Copaxone and it didn't work but am willing to try anything if it will stop this progression. 3 neuro's in the last 5 months with 3 different opinions. Rituxan, IVIG & now Avonex. I know that I have seen lots of you on it so please share your thoughts when you get a minute please.

Going to the neuro-opthamologist in the morning and then back home for Thursdays MRI's.

Thanks for sharing your thoughts. Talk to you soon

Hugs,
Erin :)
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26 Comments Post a Comment
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572651_tn?1333939396
I'm on copax so can only tell you second-hand ideas.  I know the gang around here who use avonex will check in and share their experiences freely.  

have a safe trip home.
Lulu
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649926_tn?1297661380
Lulu,

  Thanks. I was on Copaxone for a year but they took me off and said that it failed - I got new lesions etc while taking it - bummer cause everyone seems to like it.

Hope to hear from Avonex users in the next few weeks. I think people that have been on these DMD's give the best advice (experience!!!)

Talk to you soon, oh and I do like this State of yours :)

Hugs,
Erin :)
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462771_tn?1358359443
I'm interested to see what people have to say on this topic. I was diagnosed in February of this year and was given a prescription for Avonex that day. I had to have a blood test to check my liver function and my AST and ALT levels were way high, and to make a long story short, they still haven't come back down to "normal" and I'm still not on Avonex.

Apparently, liver function tests have to be done every 3 months for the first year on Avonex (or any interferon, for that matter), and they recommend 6 to 12 month intervals after that.
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198419_tn?1360245956
Hi Erin,

I'm on one of the interferons, Rebif.  YOu probably already know, but the interferons can be equally effective as the Copax, which is a peptide.  

They all are proven to work, just by different mechanism. So, maybe your body will respond well to the Avonex -- all you can do is try.

I sure hope it works.  I haven't seen you in a bit, so I'm glad you posted.  Besides the increase in lesions, are your symtoms (symptoms) increasing along with them?

Sorry if you've mentioned and I've missed you..


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649926_tn?1297661380

  Hi! Thanks for sharing and joining in on the thread.

  You mentioned that you are not any any interferon yet. Does that mean that you are not on anything for your MS yet? How have your symptoms been since the dx?

I know that liver functions have to be checked but I can't imagine that your doctors aren't going to get you on something.

Good luck & I hope that you get helpful info on the Avonex here as well.

Erin :)
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649926_tn?1297661380

  Hi there! Long time no talk , huh. My MS has been one non stop flair since January. Two episodes of ON, balance issues, speech & cognition. This has been a long year!

I am kind of excited about starting a new DMD and a little nervous. The doctor said possible flu symptoms for 24 hours after each injection. That's one bad day every week if it's true, yuck. I guess if it stops this progression it will be worth it but I would love to hear from someone that has taken it.

What kind of side effects do you get with Rebif? How long have you been on it? I already can't remember which other one was offered but I asked the neuro which one she would take if she were me and she said Avonex.

Thanks for the well wishes & support

Hugs,
Erin :)
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462771_tn?1358359443
I’m not on anything for MS as of now. My symptoms have been minor to mild except for some pain in my ribs and back caused by a lesion in my thoracic spine. I’ve also had what I can only assume are optic nerve issues (pain behind my eye, visual artifacts, blurred vision etc.) that are getting worse little by little.

One thing I can tell you about Avonex and my experience so far is that the Biogen/MS Active Source people are absolutely wonderful to work with. They’ve been an incredible resource and have helped me in so many ways to be able to eventually start and continue with Avonex to treat my MS. My insurance doesn’t cover Avonex very well because they consider injectable medications to be a medical benefit instead of a pharmacy benefit, which makes it an 80/20 split after my deductible is met. Every pharmacy I’ve spoken with so far has quoted me about $1000 per month for the prescription and that would leave me with $200 to pay every month, which I cannot afford. The folks over at MS Active Source have different programs for financial assistance and are very helpful at finding it for people that need it, so don’t let the cost dissuade you from considering it as a viable treatment.

I have a great neurologist and I’m sure he’s got some ideas on what to do next, even if I can’t start Avonex because of my liver enzymes being high. I have faith that everything will work out and it may not happen on the time table that I expect it to, but one way or another things will work out.

All the best,
Jason
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Avatar_f_tn
Hi, we have not met, but I have been part of this forum since 12/07.  I do not post much, but read it every day.

I have been using Avonex since 2005 and at the beginning the side effects would kill me. Sometimes it was the fever, others were the chills or the body pain associated with the flu, but they only lasted 24 hours.  Now, after so many years, I may get a fever once in a while, but I have not have new lesions since 2006, which is to be expected from the DMDs!!!!!!!

Start with your support group and make the Biogen people part of that support group.  You can also include me, if you like.

Good luck with your medication,

Zulma (gooddays)
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198419_tn?1360245956
Yea, waaay too long w/no chat.

Don't be fearful of those flu-like symptoms....  I did experience symptoms, but nothing compared to the flu.  A little feverish, achey (achy), headached, etc.  

Like Jason says, the nurses are terrific.

I'm so glad you are excited for the change.  I pray it stops it dead in it's tracks and leaves your flareless!  I can say for sure that I've been good on flares.  

I'm not MS symptom- or issueless and many of my issues have become permanent.  I still get new ones, BUT, I have not experienced a major relapse since the 1st big attack.  I don't like the continuing issues, but I'll take it over the constant flares anyday...

How long? I've been on and off it the past 2 years. I can splain that one to you if since you've not been around (hint-hint - I'm kidding of course).

Gooddays! Where the heck you been???? Nice to see you!
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649926_tn?1297661380

Jason,

  You sound very optimistic. I like that. I hope that everything does work out for with or without the Avonex :)

You said that you have had issues with your eyes. I have had Optic Neuritis twice already this year and just visited a neuro-opthamologist yesterday. I'm glad that you like your neuro but would recommend pushing the issues with the eye problems. You could be getting optic nerve damage like me and it stinks! Treatment is IV steroids and then oral steroids so no waiting would be needed if the doc thinks you need it.

Thanks for sharing & please talk to your doc about the issues with your eyes.

Take care
Erin :)
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649926_tn?1297661380
Zulma,

Hi! Thanks for sharing your experience. It always feels good to hear from someone that has been on a DMD that you are getting ready to start. I have researched online but that is just clinical data and doesn't feel as good as reading your story.

I like the fact that over time it sounds like the effects haven't been as bad but I love hearing that you have had no new lesions since 2006!!! Wow that would be so awesome.

Thanks again for sharing. I hope that you continue to do well & I have as much success in stopping this progression as you have had.

Erin :)
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649926_tn?1297661380

Hello miss smarty pants :) !! I have been off and on with the forum since January because I have had to many issues and with the ON reading the screen was hard.

I have had good days where I read all kinds of posts and add my 2 cents to most or at least say hello but most days I just answer messages that have been sent. It keeps me connected but not as up to date with everyone as I would like.

That is another reason that I am kind of excited to start the Avonex. One shot a week and less hiking to tons of doctors :) I hope that your prayers and mine come true and it stops it in it's tracks!

I know that I have permanent damage and issues that will never go away, like you I will deal with it but would be so happy to not be constantly flaring up!

Thanks for sharing and cheering me on. I will probably me acting like a baby about the flu symptoms so if you see it remember to kick my butt, lol.

Hugs,
Erin :)
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Avatar_f_tn
I'm an Avonex user checking in. There's no predicting how bad your side effects will be, but there's also no reason to expect you won't be able to manage them. It does take a bit of experimentation. I do very well with mine, all things considered.

I know of only one or two here who have stopped Avonex because of side effects. So keep an optimistic attitude, and let us know how you do.

ess
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649926_tn?1297661380
ess,

  Thanks Avonex user for checking in :). Great to know that not very many people here have stopped from side effects.

I will keep you posted when I finally get started. I might have the usual questions like is this normal etc. and will appreciate your experience and advice.

Take care & have a great weekend

Erin :)
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198419_tn?1360245956
You got it! Just so long as you are willing to return the butt kicking when I need it!

lol....
(((hugs)))
-smarty-pants
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Avatar_n_tn
I'm up to about my 18th shot of Avonex this week. The acute flu-like symptoms are over in about half a day, I can manage that. What I find much, so much,  more challenging is the fatigue, headaches, wierd unpleasant alien feelings that last the next 2 days at least.  Of course I take ibuprofin, ASA, etc. but they have limited effect.  Anyone experience this, have suggestions? Do these uglier sympotms diminnish with time. I would have thought that after 4+ months the symptoms would have diminished more than they have. .
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233622_tn?1279338505
I have been on Avonex for over a year and still have side effects.  

They are not as bad as they were but still miserable.  I have had it.

Last night when my husband gave me my injection my muscle had a spasm and tightened up.

It push the needle half way out and he has to push it back in again.

I am done with it.  I see my new doctor, my other ms doctor retired, in two weeks.

LA
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649926_tn?1297661380

  Well this is a bummer! I have only done 2 injections ( still a newbie :) and I think the side effects are brutal. I inject Friday night at bed so that it doesn't hit me during the week and I won't miss work.

It feels like my whole weekend is devoted to feeling like **** and then Monday back to work and start again. I have chills, night sweats, fatigue and terrible bone/muscle pain for about 36 hours yuck! My copaxone didn't do this but it also didn't stop my progession.

I am sorry that you are both still suffering the side effects 4 months and 1+ year later. I hope that it is doing it's job and stopping you from getting worse.

I think I need a pep talk from someone! It's Monday and I am already dreading Friday because of the shot. Sllowe if you are out there - tell me to suck it up would ya, lol.

Hugs,
Erin :)
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198419_tn?1360245956
Yea, I hear ya.  Especially the headache.  Suck it up would ya! (You did ask me to say that right?)

Seriously, if it's any consolation - I'm dreading my injection too.  I've stopped and started a couple times now and I'm fairly sick having to get use to it.

I'm going to pop some advil and just do it.  You with me?

Wah,
shell


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233622_tn?1279338505
I am requesting/demanding another medication.  I am tired of feeling sick and dreading the weekend.
I know I am being bad and not encouraging but there are other options.

LA
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789195_tn?1238173696
Avonex user here.  I haven't posted in a while and I am sorry.  I've been thinking of you all.  My Avonex shots, coupled with the Extra S. Tylenol ( Dahh, what was I thinking) for headaches has kicked my AST & ALT's off the chart.  So now I am on a 4 going on 5 week lay off of injections program.  After 4 weeks off Avonex my AST/ALT's were still high. I will now wait one more week and one more blood test before I decide what to do.  

As for Flu like sides, I definetly had them, worse the first couple of weeks and then a little bit better, the next three times.  I had the horrible muscle spasm two times and thought I would pass out.  That part was worse to me then the headache.  I might be switching to Copaxone, or it was suggested for me to titrate the Avonex injections and of course i have discontinued all tylenol use.  Nobdy said it was going to be easy, but we must stay positive.  :)

Rosanne
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Avatar_f_tn
Hi, I am glad you started injecting yourself, butt hate that the flu like smptoms are killing you.  Hang in there, they will subsid a little, it is a matter of time.  I take tylenol before I go to bed and so far so good.

You know the fatigue may not only come from the Avonex, it may be from the MS itself, you know that is one of the worst symptoms we may have and the DMDs are only to stop the progression of the desease not the symptoms.  On Saturdays, even if I don't have any symptoms I tried to stay in bed a little longer so that I can rest and not push my luck with the fatigue.  In the beginning I thought OH no, one more thing to get used, as if I need more, but I got used to it.  The best thing in taking Avonex for me is that it is only once a  week.

Do try to get your own support group, friends, family to be with when you inject and to be around the whole weekend in case you feel something.  It is good having company around, it does not give time to think about the injection or the side effects.  Also get in touch with the Biogen/MS Active Source, they have a wealth of information that may help you and they are excellent to speak with.  There are people like you and me with MS, so they know exactly how we feel.

Good luck with your treatment!!!!!!

to Sllowe

I am doing ok , but I am a first tim gradmother and I am dedicating much of the good days with my new gradsoon.  He is six months now.  Thank you for asking.  Take good care of yourself.

Zulma (gooddays)

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Avatar_f_tn
Hi, I al a 10 year + avone user.  I block it out (don;t think about it)  until my

husband says I am going to mix your shot.  I have too or a believe i will go nuts.

I tried the pre=mixed and it did not agree with me, so I get the mix it yourself type

I still get the flu like symtoms (symptoms) and also use a tylenol ot what ever i have available

I had to resort to taking a valium a few hours before because I too was getting spasms

when ever I was injected.  I think it us just nerves because im tired also   Linda
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789195_tn?1238173696
Hi, I was wondering what differences you felt using the mix it yourself injections, from the pre-mixed kind.  I have only every used premixed.  

Thanks.  

Rosanne

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462771_tn?1358359443
I’ve been on Avonex for a month now and here is my $.02:

I have the pre-filled syringes and the smaller gauge needles since I’m not a big fan of them and it helps me psychologically to get over the self injection. The first week, I had my wife inject a full dose in my right arm at 8:00PM. Unfortunately we decided to do it before we had the Avonex nurse come and give us the training in which she told us that in my case, the doctor prescribed a half dose for the first 4 weeks and a full dose thereafter and that injecting in the arm typically causes worse side effects for reasons I can’t remember. By about 2:00AM, I had a fever of 103 and the flu-like side effects were in full swing. I was trembling uncontrollably, every joint and muscle in my body was screaming in pain and I felt like I wanted to die. I thought to myself “there’s no way this is worth it”.

I went to my neurologist appointment later in the following week and told them what had happened and they kindly told me that I was completely in error and I did it to myself. The next dose on the following Saturday was done under the supervision of an Avonex nurse sent to educate me on the process and use of the drug. I injected myself, after a few minutes of working up to it, with a half dose in the right thigh. This time, the side effects were much more manageable. I still had muscle and joint pain, but it was more of an ache than anything else. I only had a mild fever that lasted only a few hours instead of all night and into the next day. Even still, the side effects have been nowhere near as bad as I did the first week.

This Saturday will be the 5th injection and it’s the first full dose since the very first injection and I’m anticipating that the side effects will be worse than they have been for the last 3 weeks, but hopefully not as bad as they were that first time.

If you’re at all apprehensive about giving yourself the injections, I completely understand. Don’t let it get in your way though; you can do it! I’ve only been doing my own injections for a month, but I’m so much more confident now, even after only 4 weeks, that it doesn’t bother me to do it myself. I find that giving myself the injection gives me a sense of control and that makes it easier to manage my fear of needles. It’s also kind of metaphorical in the sense that it gives me control over my MS to a degree. Every injection I perform is one more blow dealt to the progression of the disease.

I hope this helps!

Jason
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4233284_tn?1351459532
hi Jason! are you still a member???
kim
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