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Why did you choose Avonex?

A board to discuss the Multiple Sclerosis modifying drug Avonex

Why did you choose Avonex?

Postby shaight » Wed May 04, 2011 9:12 am

i posted a similar question elsewhere with no results. therefore, i am going to post this same question in the specific drug rooms.

was it your Dr's recommendations or was it due to your own personal preference. if it was your own preference, why this one?

thank you
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Re: Why did you choose Avonex?

Postby NHE » Thu May 05, 2011 3:07 am

I was diagnosed in the Fall of 1999, but had my first symptoms in the Fall of 1991. I was symptom free for 8 years. I took 2 or 3 months after my diagnosis to examine the different ABCs available at the time. I read multiple journal articles and went through the doctors prescribing information with a medical dictionary and a fine tooth comb. My discovery of this information was quite accidental. I was given the glossy marketing pamphlets by my neuro and I just happened to notice that there were pockets in each half of the brochures which were almost hidden. I wound up choosing Avonex. It seemed like the lesser of the three evils (they're probably all equally evil). My reason's for choosing Avonex were the once per week injection, the absence of injection site reactions - Betaseron's prescribing information described these as "injection site tissue necrosis", and the fact that Copaxone was found to be clastogenic in a mutagenesis assay meaning that it causes breaks in DNA. I suspect that the lipoatrophy problem associated with Copaxone might be linked to apoptosis (programmed cell death) induced by its clastogenic activity.

Anyways, I was on Avonex for a total of 10 years. The first year was very difficult as the side effects were considerable - fever, chills, shakes, loss of energy, etc. The side effects usually only lasted for about a day and I found that they were more manageable if I injected midday as opposed to in the evening and used ibuprofen instead of Tylenol. Around 2 years or so, the side effects weren't all that bad anymore.

I also investigated dietary changes as well as supplements. I found lots of anecdotal recommendations published in various books. However, I am a "show me the data" type of person and I started digging my way through the PubMed database and read many full journal articles. I eventually wound up with a supplement regimen that includes omega-3 fatty acids from fish oil, vitamin D3, R-lipoic acid, turmeric, green tea, calcium, magnesium, zinc and flax seed. I have also experimented with acetyl-L-carnitine. In the past it has helped reduce my cog fog and fatigue, but it isn't helping so much now. I've also been experimenting with cinnamon lately but that's a long and partially unrelated story.

Adding to the supplements, I tried to eliminate some proinflammatory foods. I stopped consuming all trans fats and try to minimize saturated fat. I have also greatly cut down the amount of sugar I consume. I noticed a big change after cutting out sweetened yogurt. High sugar foods now seem unappealing to me. Note that I still consume a bit of dark chocolate, 70% cocoa or higher, from time to time in moderation.

I have felt that I have been slowly progressing over the last few years. I now use a cane since I have pretty bad foot drop. I stopped taking Avonex last September since I was tired of it and also felt like it wasn't doing any good any more and was probably hurting me more than helping me.

If I could go back in time to my CIS that was undiagnosed in 1991, I would do the diet and supplement changes that I've described above. I would engage in a rigorous exercise routine and maintain it religiously. I often feel now that I'm hanging from the proverbial knot at the end of the rope, but that the rope keeps stretching. With MS, we have to fight for the privilege of standing still. If we don't, the rip tide will wash us out to sea. The water is noticeably deeper now and doing an exercise routine now is difficult due to fatigue and loss of muscle tone.

I wish you the best with your decision. People are now diagnosed earlier and earlier in the disease process. I experienced 8 years of clinical remission without doing anything different. If you read enough personal experiences, I think that you'll find that an 8 year remission is not unusual. I have read of people having even longer periods of remission, up to 15 to 20 years. Had I been diagnosed and put on one of the DMDs, it would have been reasonable to attribute the 8 year remission to the medication. However, I suspect that if I had started the dietary changes and supplements back in 1991, then the remission would have been even longer.

I currently feel a bit jaded by the DMDs and no longer feel that chronic immune suppression is a valid treatment paradigm (sure, corticosteroids such as prednisone can shorten an attack by inducing apoptosis in white blood cells, but long term use doesn't seem to have much impact on progression). My current hypothesis is that MS may be a neurodegenerative disease with a component of chronic immune activation in susceptible individuals as opposed to one of autoimmune etiology. After having read much of the evidence surrounding the CCSVI hypothesis, I suspect that it will pan out to play a large role in the disease process. Researchers have repeatedly published over the last 20 to 30 years that MS patients have reduced cerebral blood perfusion. However, it seems that few have asked why this might be the case until recently.

NHE



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Postby shaight » Thu May 05, 2011 7:13 am

NHE - thank you for your response.

after reading thru this site the one person i'm drawn to over and over is george and his experience with his stem cell transplant. aside from it being cost prohibitive it appears to be the best solution...or cure!?

i am really leaning toward a natural therapy solution. i feel that the side effects will effect me more negatively than the MS. maybe this is just wishful thinking. i've never been much of prescription drug person...i just don't believe in them unless it's absolutely necessary. whereas the MS drugs don't seem to be completely effective, i have a hard time feeling that they are necessary. my head is spinning...
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Re: Why did you choose Avonex?

Postby NHE » Tue May 10, 2011 10:55 pm

Here's another reason I chose Avonex over the other two ABC drugs (Betaseron specifically). Avonex is produced in mammalian cells while Betaseron is produced in bacteria cells. Inf-B is a glycosylated protein meaning that after the cells synthesize the protein it gets sugar groups stuck onto it. These sugar groups are important for protein recognition and activity. As an example, the A, B, O blood types are defined by the different sugar groups that are present on a protein on the surface of the red blood cells. Bacteria do not glycosylate proteins. As such, proteins produced in bacteria cells which are normally glycosylated will tend to be seen by the body as a foreign protein and will have a greater tendency to elicit neutralizing antibodies than their glycosylated counterparts. Thus, the incidence of neutralizing antibodies should be lower with Avonex than with Betaseron. Here's a figure from a journal article which provides confirmation.


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Postby shaight » Wed May 11, 2011 6:43 am

this site it truly amazing. when i read posts from you, jimmylegs and others i feel like a complete knucklehead! :D not that i'm not a complete knucklehead, i guess i just didn't realize it.

i ended up choosing Avonex yesterday. i'm going to give it a shot :wink: and see where it goes. the two drawbacks i saw compared to the others were intramuscular injection and possibly that it is less effective than Rebif.

everything else in comparison was a plus for me. one of the biggest is my sister is also on Avonex with little side effects.

i am really focusing on diet and supplements also. i contacted my dr to schedule a blood test to see where my levels are currently. once i have that i will develop a routine.

exercise has been a part of my life forever now. i was an avid runner for years as a way to stay in shape for skiing. since knee surgery last yr, my running has been cut back and i focus more on mtn biking and weight training. yoga has been on the list for a while and this is a good reason to start.
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Re: Why did you choose Avonex?

Postby NHE » Wed May 11, 2011 9:12 pm

Hi Shaight,
You may be interested in the following threads.

Injection site locations
post70031.html#p70031

Injection technique
viewtopic.php?t=4805

The second thread listed discusses the powdered form of Avonex. I was on this for 10 years and it was still available from Biogen at the time of my last injection in Sept 2010. Some people who have switched from the powdered form to the liquid prefilled syringes have struggled with increased side effects. For example, one person stated that it felt like they were going back to the beginning with Avonex even after having been on it for two or three years.


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Last edited by NHE on Thu May 26, 2011 12:15 am, edited 1 time in total.
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Postby smokey » Thu May 12, 2011 12:33 am

Hi Shaight. I'm on Avonex. I chose because its only one shot a week. I have/had a severe needle phobia. It took a lot of working through to learn to self inject. But I got there.....Smokey
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Re: Why did you choose Avonex?

Postby ShootingStar » Sat Apr 28, 2012 10:01 pm

Because it's only once a week.
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Re: Why did you choose Avonex?

Postby Azile » Fri May 18, 2012 6:40 pm

I just started Avonex pre-filled today. I have tried Copaxone and got anaphylaxis reaction. Bad allergy, no good, had to switch. Thried Rebif. OUCHY! Mostly I had to stop because I was trying to start a family. After I had my two boys, I started on Betaseron. Not so bad on the pain level, but WOW was it tiring me out! I didn't like that I was so sick and tired every day. While watching twin babies, I had to be there 100% and that medicine did not allow for that and I never got used to it. I also got black and blue marks all over my arms and legs and I was not taking it incorrectly. So I stopped. Eventually after about 2-3 years off meds, my doctor wants me back on a medicine and wanted to try Avonex. That way if I do have a reaction, it's only one day a week I'm out and my husband can watch the boys. It's intermuscular which may hurt less (so far, it does not hurt me at all with the smaller sized needles). I am being titrated and I'm soo tired now on 1/4 dose. I'm getting a bit worried how the higher doses are going to effect me, but we'll see. If this keeps up, I may try the powdered formula and see if it's any different.

I was considering Tysabri, but I have been tested positive for the virus that could cause the brain infection if I do take Tysabri. So, I best not take that. I have not had any new lesions since I was first diagnosed in 2003, so hopefully I can manage to keep them off with the Avonex.
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Re: Why did you choose Avonex?

Postby Avonexveteran » Tue May 29, 2012 11:06 am

When I was first diagnosed in 95, only Beta was available. Tried Beta but had to quit after a few doses due to side effects. Started Avonex in June 96 shortly after it was introduced. Copaxone didn't come out until I believe sometime in 97.

I once was briefly on Avonex prefilled but went back to the powdered form due to increased side effects from the prefilled. I remain on the powdered form to this day with no side effects, don't even premedicate.
In all my years on Avonex I have remained stable with no attacks.
Been taking Avonex since June 96
For me Interferon therapy is essential in slowing MS down.
Will continue with the weekly injections and take my disease one day at a time...
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Re: Why did you choose Avonex?

Postby SeifSZ » Sun Jan 05, 2014 4:27 am

THANK YOU
Last edited by SeifSZ on Sun Jan 19, 2014 2:04 am, edited 2 times in total.
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Re: Why did you choose Avonex?

Postby NHE » Sun Jan 05, 2014 4:32 am

SeifSZ wrote:Hello NHE,

I would very much like to be able to contact you for a few questions on dealing with the disease. please contact me on seif.zaher@gmail.com if you can.

I wish you health and happiness.


Please send me a Private Message (PM) by clicking on the PM icon. Thanks.
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Re: Why did you choose Avonex?

Postby BethT » Sat Jun 07, 2014 9:59 pm

I had no other choice. Because my left hand is pretty much useless, I cannot use a regular syringe - and I live alone, so there is no one to help me. The pre-filled auto-injector pen was the only option I had.
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