Long-term Avonex Users

[dm0329]

I'm seeking feedback from my fellow long-term (10 years or more) Avonex users. It's been 16 years since I began my Avonex journey (20 years since dx). I was dx in 1994, no DMDs then, a bad flare sent me back to neuro 3 years later who started Avonex immediately.

I've had a few mild flares on Avonex but no "enhancing" lesions or major MRI changes, but I have tons of black holes and lesions on MRI. Neurodegenerative diseases stink, huh? It's been a slow steady decline for me.

How have you been coping on Avonex? Have you resolved to "stick with it" long-term as I have? If not, what prompted switching your DMD or stopping it? Has it been a life-long commitment for you, too?

What stories can you share about your long-term Avonex journey? Hope you'll chime in. . .

[TLC_31]

I'm not quite qualified for your 10-years-or-more club, but since no one else has weighed in, I will! I do expect to join the club in the spring. Shot #495 is coming up this weekend. I had a nasty headache and felt run-down for more than a day after shot #494, but my side effects are usually much milder.

I haven't "resolved" to stick with it so much as I've "resigned" to stick with it. For years I figured something else would come along before I hit the eight-year mark, and sure enough it was Gilenya. It didn't agree with me, however, and I gained appreciation for how good I've really had it on Avonex. No relapses since 2006, and negligible progression. An MRI this winter (first in three years) might offer more guidance.

I haven't self-injected in more than two years, so I'm very thankful for my wife (a medical assistant) being there for me every week. She steadfastly opposes me trying Tecfidera; because she gives me shots and because Tecfidera seems to have its own share of side effects, I don't push the issue. Maybe after the pegylated interferon has been out for a while, maybe then I'll switch?

[dm0329]

TLC 31 thanks for chiming in!

I'm seeking feedback from long-term Avonex users and appreciated your views. I'm a huge needle weenie and am so surprised I'm still self-injecting that huge IM needle. I haven't tried the "auto-inject" as I'm slow and steady with my weekly pokes.

In a way, I'm afraid to switch, getting new side effects, etc. But my neuro would want me to go to Tysabri, if any active lesions are on my MRI. I get a yearly MRI, stable, but tons of the old damage.

I resolved that I would switch, if there were enhancing lesions, but "I'll jump off that bridge when I get to it" so to speak. I often wonder why folks switched their DMD's.

Again, thanks for your feedback!

Anyone else wanting to chime in. . .

[tommylee]

I was on Avonex for 12 years.
The side effects never relented but I stuck with it.
Finally I tired of the side effects and the expense and quit around 4 years ago.
I still do a lot with my diet and exercise program but no DMD's at all. - I feel better without them.

[RoyalOne]

Been on Avonex since 1996. No plans to quit as long as I remain stable. Its really not a problem for me as I get no side effects and don't mind self-injecting.

[Shawshank]

I've been on Avonex since 1997 - with a break for pregnancy and a break a few months ago when I tried Tecfidera. I've been incredibly lucky on Avonex - and have a husband who injects for me - but I hate the shots.

The shots were so getting to me that I switched to Tecfidera the minute it came out. But the Tecfidera side effects were absolutely miserable. Very, very tough couple of months. Realized how lucky I'd been all these years to have Avonex, an effective drug that I could tolerate. I'm not sure what will have to happen for me to try something new again.

[BigA]

I'm just a newbie - coming up on 4 years. I had a plan to quit at 5 years, but recently I'm thinking "OK, I'll quit at 10". I worry long-term about cancer and of course, hate to lose my Saturdays.

Now that said, I have a theory about avonex users. By definition, if you're on Avonex, you're probably doing pretty well. That's because many people start with Avonex and no one switches to Avonex - it's the weakest (in theory). So if you're on Avonex, you're either new or you're doing well.

Whether we're doing well because of the avonex, or are still taking avonex because we're doing well and don't need to switch is another question we'll never be able to answer unless we stop taking it.

I can't see why anyone would inject, now that there is an autoinjector. It's heaven. Really, a non-issue. The needle goes in like a speeding bullet and you're done.

[suenan]

I'm new to all this. When I was diagnosed a couple months ago, the doctor explained all the medicines available and told me to choose one. I argued that she is the doctor, not me, but she would not budge. I chose Avonex because it has been on the market longest with a proven track record. I self-inject, and started the pen two weeks ago. I'm not real clear on how long to leave the needle in. I'm pretty wiped out the next day, then back to "normal" the day after so I'm pretty pleased with my choice.

[bubblebabe]

I'm a newbie too! Did my 7th injection last night and for the first time actually slept through the night, yay me!! Still not feeling perfect but much better.

I love the auto injector, I don't even feel the needle. Titrating with the syringe sucked, the needle was big and it hurt. Now I just lay on the bed, open my book and read while my hubby injects my leg. I stay distracted with my book and hubby does his thing without telling me when he's gonna push the button, I don't want to know in case I would jerk away. Click and then he counts to 10, one one thousand, two one thousand and so on, wipes it and puts a band aide on it. Done. Easy peasy. No more anxiety like I had with the syringe, it would make me sick all day thinking about doing my shot, no more with the auto injector!!

[Lucid Clue Said]

Tec was nasty, now back to Avonex or onto Rebif

the Tecfidera side effects were absolutely miserable. Very, very tough couple of months. Realized how lucky I'd been all these years to have Avonex, an effective drug that I could tolerate. I'm not sure what will have to happen for me to try something new again.

I wish to echo that.

Has anyone gotten the impression that Avonex is less effective than Rebif and Betaseron? I predict a fight with the neuro over the subcutaneous interferons. Copaxone was an early fail for me as well, dispute over whether it was the post-injection reaction or not because it was not seen by a doctor, just me and a friend I had examine my skin for the extent of the rash. I will never forgot that chest pain!

I just checked my online account at the hospital where the regional MS center is and I do not see a report on the MRI done there last summer. I am unclear what the neuro said other that skipping several years of MRIs made it had impossible to see when damage occurred, but damage is there, was my impression. Old or new, was the question.

Clinically, being on Avonex since 2000, I have been fairly stable. I have a longstanding visual issue--not sure how much of this is from the optic neuritis or not--and within the last year, the toe/s on my right foot "stick" to the bottom of my shoe. That was a seasonal intermittent issue, which has become permanent in the last year and since experimenting with Tec, feels like it involves several toes at once, instead of just one toe.

I am conflicted about putting up with the itchy welts of a subcutaneous interferon again since I am approaching my 20th year of disease or if I okay to insist on returning to Avonex or not. Bad things are supposed to happen by year 25 is my understanding, and I certainly do not wish to convert to progressive form.

Your thoughts about insisting on Avonex or going to Rebif are appreciated. Thanks.

[loropothy]

staying put

Like those before me, I plan on continuing on lyo-form
Avonex. I have been using the drug since October 1996.
I had a terrible reaction with the pre-filled form. Even 'tho
the pen seems easy, I'm too big a baby to endure the (possible) side-effects of the pen.
I'm just too comfortable living with the additional work that
comes with using the lyophilized(sp?) form of Avonex.
Hope this helps.

Lorie J.

[Alpharetta]

Two years on Avon pen

I started on copaxone for the first two years after my diagnosis. Conditions worsened and MRI went downhill went to avonex. When tecfidera came out jumped on it, early side effects I could deal with, decline in walking abilities I could not.

Back on avonex, use a cane rarely now, but the day or two after the shot my walking significantly declines. Waiting on the once per month but sticking with it because I do believe being ona did is better than. None.

[Bobomarie]

Longterm Avonex

Diagnosed December 1999 and started Avonex March 2000. I haven't had any relapses that I know of, but I see a very slow slide on some of my cognitive issues and with the balance. I use the prefilled syringe and plan to stay with it, as long as I get the shorter needles.
I tried the autoinject and hated it. It left too many bruises and I couldn't stand the "bam" effect. I prefer choosing the spot to inject and the speed I push the plunger into my thigh. Yep, bit of a control freak :-)
The other inject meds are all just under the surface of the skin. I bruise easily and the neurologist counseled me on problems with skin irritation with them. This IM shot once a week suits me, as I do it Sunday morning after taking Alleve and get on with my day. A few "off" Sunday's once in a while, but by Monday I'm good to go.
Cheers.

[PJ Bahr]

How have you been coping on Avonex? Have you resolved to "stick with it" long-term as I have? If not, what prompted switching your DMD or stopping it? Has it been a life-long commitment for you, too?

Hi! Just found this forum tonight and am DELIGHTED to be here!!!!!

I've been on Avonex 17 years and have been coping very well after the first year of flu-like reaction symptoms. I HAD intended to stick with it long term however…… just learned that my copay is now going to be almost $300/month so now am considering bailing on it.

I posted a new thread asking about anyone that's discontinued Avonex after long-term use and if they've had success or side effects, etc.

I've contacted Biogen and am waiting on a reply as to whether or not they will assist me financially. If not - I'm bailing. I think…….

It's so discouraging that the medication is so outrageously expensive!!!!

Also I'm on Provigil as fatigue is my chief complaint and I take Baclofen as needed for terrible charlie horses.

I try to eat healthy (eat beef only once a week or so), low fat when possible, almond milk versus dairy milk, fresh fruits and vegetables every day and not too much junk food.

I take a lot of vitamins and give myself a B12 injection every other week.

My fatigue is debilitating so I rearrange my schedule so that activities are mostly morning and early afternoon.

THANK YOU so much for starting this thread. I was so happy to see it when I got signed on here tonight! God bless …...

[doe]

so far so good

I've been on Avonex for 11 years. If i do the ibuprofen with the shot i'm fine. I also purchase in three month supplies. with each new shipment the side effects can be varied. my issue has always been the months long numbness and stinging below the injection site. Not every time but this last one has been for the past 5 months. can't remember if the last one was this long.