Experiences with Avonex

A board to discuss the Multiple Sclerosis modifying drug Avonex

Experiences with Avonex

Postby Arron » Wed Mar 29, 2006 4:29 pm

This is a call for our members who currently are, or previously have taken, Avonex for the treatment of MS to please share your experiences with the therapy at an exciting new project that has sprung out of our work at This is MS, aptly titled "the Experience Project"

Born out of our experiences (no pun intended) here at This is MS, where a wonderful community has formed based (originally) on shared and common experience, the Experience Project extends that reach of reassurance and wisdom provided by people who have "been there before" to all people and all experiences.

Specifically, while MS can certainly shape a person, it does not *define* them-- each of us are complex individuals with thousands of experiences that make us who we are, of course one of the most potent being our experiences with Multiple Sclerosis.

Each one of those experiences would be worthwhile to record for your own history, the therapeutic effect of writing, and the benefit it could provide to another who is just now facing something you have already been through (and survived). Your experiences will undoubtedly help countless others.

Participation is of course absolutely free. We have been working passionately on this project for a long time, and really believe in its potential to help others. Taking a few moments to share your experiences with the MS therapies you have tried will help us make that a reality.

Share Your Statin Experiences

Read Others' Avonex Experiences
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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My experience with Avonex

Postby Turk » Sat Feb 26, 2011 11:23 am

Firstly I just want to say that I'm not a fan of sticking myself with a needle once a week. That being said I've been faithfully doing so for 2 months now. I was a little concerned about the flu like side effects. The first time I took it I made sure that I drank plenty of water that day and took Tylenol just before the injection...which I took about 2 hours before I planned on going to bed. That night I thought I was going to die. The flu like symptoms were unbearable! I sincerely thought it was the end of the world. After spending the whole night sweating and shivering and hating my life, I decided that I was never going to take the shot again. However, the next injection day came around and I found myself setting up to take my shot.

Now, this is the important part. The week between shots I made sure that I was properly prepared. I started taking a multi-vitamin. I started eating better. I drank AT LEAST 32 oz. of water a day. When I took my shot I chased it with a glass of water and one tylenol PM and one regular tylenol. I take my shot at around 9 pm. The Tylenol PM doesn't quite knock me out, it just makes it easy for me to sleep.

I'm pretty pleased to say that I haven't had a single flu like symptom ever since my very first shot. So I would recommend trying that little method. And if it works for you, great.
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Possible Liver Failure

Postby jackD » Sun Feb 27, 2011 4:42 pm

After the first 3 Avonex shots the more severe side effects like severe chills just "go away" for normal ordinary nonspecial nonblessed folks.

You need not do anything special to make this happen.

Go VERY LIGHT on Tylenol. The Avonex is brutal on the LIVER. I would also go easy on drinking any alcohol. The combination has been known to kill MS FOLKS.

The Tylenol is even worse for the liver. See below extract on causes of liver failure in the real world.

jackD

Acetaminophen Is Leading Cause of Acute Liver Failure

Download Complimentary Source PDF By Neil Osterweil, Senior Associate Editor, MedPage Today
Published: November 30, 2005
Reviewed by Robert Jasmer, MD; Assistant Professor of Medicine, University of California, San Francisco . Earn CME/CE credit
for reading medical news SEATTLE, Nov. 30 - Liver toxicity from acetaminophen poisoning is by far the most common cause of acute liver failure in the United States, researchers reported.
Action Points

* Inform patients that acetaminophen dosing greater than 7.5 g/day could be hazardous. Reassure them, however, that acetaminophen-related liver toxicity is an uncommon occurrence, and that the drug itself is not toxic.

* Instruct patients who use over-the-counter medications to read labels carefully and look for the ingredient acetaminophen in analgesics, cold and allergy medications, sleep aids, and other products.

* Inform patients who have alcoholic liver disease that smaller amounts of acetaminophen (4-5 g/day) have been reported to cause acute liver failure.

Users of the popular painkiller who are most at risk include those with depression, chronic pain, alcohol/narcotic use, and those who take several acetaminophen-containing products at the same time, they added.

"Education of patients, physicians, and pharmacists to limit high-risk [acetaminophen] use settings is recommended," wrote Anne M. Larson, M.D., of the University of Washington, and colleagues at 21 other U.S. centers, in the December issue of Hepatology.

Acetaminophen (Tylenol and generics) is widely available in over-the-counter preparations for headaches, colds, allergies, osteoarthritis, and other conditions.

The data suggest that consistent use of as little as 7.5 g/day of acetaminophen could lead to severe hepatic injury, Dr. Larson and colleagues wrote.

But in an accompanying editorial, John G. O'Grady, M.D., of the Institute of Liver Studies at King's College Hospital in London cautioned that there's no need for panic, because acetaminophen-associated liver toxicity is uncommon, and the drug itself is not toxic.

"Measures to minimize acetaminophen hepatotoxicity are important but need to be considered in the context that the apparent scale of the problem is a reflection of the huge number of patients taking acetaminophen with good effects and in the absence of any adverse event," Dr. O'Grady wrote.

"Educational initiatives to highlight the range of preparations containing acetaminophen, together with reiteration of advice on maximum daily dosing, have potential benefits, especially with respect to unintentional overdosing," he added.

Acetaminophen overdose -- anything more than the package-recommended 4 g/day -- has been associated with severe hepatic necrosis leading to acute liver failure. Some people deliberately take toxic doses in suicide attempts, but others may accumulate high levels of acetaminophen unintentionally when they take, for example, Tylenol for a headache and a second acetaminophen-containing product for cold symptoms.

Although N-acetylcysteine administered with 12 hours of ingestion of acetaminophen can prevent liver injury, many people may be unaware that they could benefit from it, Dr. Larson and colleagues wrote.

"Unintentional overdosing is usually only recognized after symptoms have developed. Extended acetaminophen dosing, delay in seeking medical attention, and/or failure to institute N-acetylcysteine therapy are associated with greater morbidity and mortality," they noted.

To determine whether people who inadvertently overdose on acetaminophen are at greater risk for bad outcomes, Dr. Larson and colleagues at 22 U.S. tertiary care centers examined the incidence, risk factors, and outcomes of acetaminophen-induced acute liver failure in consecutive patients seen over a six-year period.

They found that 662 patients met the established acute liver failure criteria of coagulopathy and encephalopathy, and that 42% of these patients (275) had liver failure associated with acetaminophen liver injury.

They also noted that the annual percentage of acetaminophen-related failures rose during the study period. Acute liver failure related to use of the painkiller accounted for 28% of all cases in 1998, and 51% in 2003.
The median dose ingested by participants in the study was 24 g (range 1.2-180 g). The 24 g dose is the equivalent of 48 extra-strength tablets, the authors noted.

Suicide attempts accounted for 122 of the 275 cases (44%), unintentional overdoses accounted for 131 (48%) of the cases, and the remaining 22 (8%) were of unknown intent.

Among those who didn't intend to overdose, 38% had taken two or more acetaminophen-containing products simultaneously, and 63% used narcotic-containing compounds such as Percocet (acetaminophen and oxycodone) or Vicodin (acetaminophen and hydrocodone).

Eighty-one percent of patients in this group reported taking an acetaminophen and/or other analgesics for acute or chronic pain syndromes.

"Overall, 178 subjects (65%) survived, 74 (27%) died without transplantation, and 23 subjects (8%) underwent liver transplantation; 71% were alive at three weeks," the investigators wrote.
Both the transplant-free survival rate and rate of liver transplantation were similar between intentional and unintentional overdoses.
Both the study authors and editorialist suggested that a strategy restricting but not banning over-the-counter sales of acetaminophen containing medications may be necessary to prevent accidental overdoses.

"This approach was taken in the United Kingdom in 1998, when over-the-counter sales of acetaminophen were restricted to 16 g," he wrote. "In the four years following the change in legislation there was a 30% reduction in patients with severe acetaminophen-induced acute liver failure admitted to specialist liver units and liver transplant centers."

In France, where only half that much acetaminophen can be bought at one time "this measure is highly effective in minimizing severe acetaminophen hepatotoxicity,"
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avonex side affects

Postby Silverspoon » Fri Jun 10, 2011 1:24 pm

Been on Avonex for over a year, still sick of heavy headaches, and night shivers. but seem to manage most of side affects by taking at night. however sweating a lot at night is also a pain.

However have regular LFT's because of other medication and found that Avonex has had no affect on liver counts.
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Re: avonex side affects

Postby NHE » Fri Jun 10, 2011 5:44 pm

Silverspoon wrote:Been on Avonex for over a year, still sick of heavy headaches, and night shivers. but seem to manage most of side affects by taking at night. however sweating a lot at night is also a pain.

However have regular LFT's because of other medication and found that Avonex has had no affect on liver counts.


What are you taking to counter Avonex's side effects? Many people have found ibuprofen to be more helpful than the acetaminophen that Biogen recommends.


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re: avonex

Postby Silverspoon » Sat Jun 11, 2011 1:21 am

Just take pain killers like co-dydramol but will give ibuprofen a go next injection.

Thanks :lol:
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Re: re: avonex

Postby NHE » Sat Jun 11, 2011 2:35 am

Silverspoon wrote:Just take pain killers like co-dydramol but will give ibuprofen a go next injection.

Thanks :lol:


I wasn't familiar with co-dydramol so I had to look that one up, a mix of acetaminophen and dihydrocodeine. Ibuprofen works differently by inhibiting cyclooxygenase. As a result of Avonex, I used to get bad muscle spasms causing my limbs and whole upper body to jerk. These would go away after about 20 minutes following a dose of ibuprofen. Yes, I've also had the night fevers, chills and shakes. Ibuprofen helped with those as well. In addition, while it might seem counterintuitive at first, I experienced a big reduction in side effects by taking my shot in the middle of the day around noon. It seems that my body would have dificulty thermoregulating at night if I tried to sleep through the side effects. Dealing with it during the day was easier since I was awake to take ibuprofen. I also slept better. One time after taking Avonex in the evening I woke up with the shakes so bad I could barely walk. Anyways, try 400 mg of ibuprofen at the time of your shot and then another 400 mg about 4 or 5 hours later. Another schedule that worked well for me was to take 400 mg about 2 hours after my shot and then take 200 mg the next day to ease the general Avonex cruddiness feeling.

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aw..

Postby leetz » Sat Jun 11, 2011 3:42 pm

awful!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby fugee » Thu Jul 28, 2011 4:28 pm

I took Avonex when I was first diagnosed. The side effects notifications had me nervous, but it went fine. Someone else gave me the shots, that helped. Only side effects to the shot were chills if you didn't take Tylenol. If I did, I was fine. It really made things better for me. I loved it....except I had a psychological issue some years into it, and stopped. Don't know what role it played. It was a better safe than sorry decision. My health has gone to crap since, after a few years at least.

Going to try another drug "the C variety", but if it doesn't help, I'm going to skip "B", and go back to "A". I'll just see a counselor or something to keep my mind right. Things were so out of control, I can hardly put it all on Avonex. There were too many crazy things, and no one to talk to. Not the life to live maybe while taking it. I honestly feel I shouldn't have stopped it. Never let your family make too many decisions for you. At the end of the day, you have MS, not them. So I'm a fan. Just try and keep a sane life.

And once a week was great. Not looking forward to once a day.
:)
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Re: Experiences with Avonex

Postby awdesigns8 » Tue Nov 22, 2011 1:52 pm

I BEEN TAKING IT FOR OVER A YEAR NOW NO FLU SIDE EFFECTS EVER BUT THE RIGHT SIDE IS STILL WEAK CANT STAND OR WALK LIKE I USE TO AND THE RIGHT HAND GETS TIRED BUT GOD IS WITH ME SO EVER DAY I THANK GOD FOR WHAT I CAN DO AND DONT WORRY ABOUT WHAT I CANT DO LOVE APRIL
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Re: Experiences with Avonex

Postby grace422 » Thu Jul 12, 2012 2:17 pm

Took Avonex for 10 years. Flu-like symptoms, fake fever with horrific chills, massive full-body cramps, intolerable pain, and unacceptable suicidal depression 24 hours after the shot. Finally quit cold turkey after complaining to my neuro for 2 years and him not listening. Why is it that doctors don't believe their patients? How can you not believe someone when they tell you that they are depressed one day a week to the point of thinking about throwing themselves under a bus but the rest of the week they are fine? What kind of idiot doctor thinks that once-a-week suicidal depression followed by 6 days of normal behavior is psychological and not due to the friggin' drug you injected the night before?? I was so terrified after taking the shot that I wouldn't let me husband leave my side for the next 24 hours. Symptoms got worse and worse. I quit for 4 months. Called the neuro and told him if he cared, he could call me back. He finally did and I switched to Rebif 22. Same chemical I know, but no side effects. None.
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Re: Experiences with Avonex

Postby NHE » Thu Jul 12, 2012 3:34 pm

grace422 wrote:Called the neuro and told him if he cared, he could call me back. He finally did and I switched to Rebif 22. Same chemical I know, but no side effects. None.


Just curious, have you ever been tested for neutralizing antibodies? The subcutaneous injections are supposedly more antigenic than the intramuscular injections. Anyways, it's great that you're no longer experiencing the depression side effects.


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Re: Experiences with Avonex

Postby Ferrin » Tue Mar 12, 2013 12:01 pm

I started Avonex in 2001, when I was first diagnosed. I used to take Advil prior to my shot which lessened the side effects, no matter the flu like symptoms only lasted for a few months. I would make sure I did my shot on a Friday night so that I had the weekend in case I felt poorly. I also start the MS Swank Diet at the same time. The only other side effect I attribute to Avonex is that I sometimes have night sweats. Now, 12 years later, I am doing very well clinically. I am super active, run races, work out, etc, I work and am very healthy clinically. I went off Avonex for about 15 months to get pregnant and nurse, but then went right back on it (son is now 8 ). I've experienced a few relapses but all in all very minor- I never had to miss work for any relapses, unless I was really giving myself a break (but honestly I could have gone to work). My MRIs showed increased lesions after I had been off the drug to get pregnant, the Avonex, I believe, had really been protecting me. It has been incredibly effective for me.

Now though, 12 years on, my MRIs are showing a lot of new lesions. I feel great, but do not know what to make of it. Has anyone heard of Avonex becoming less effective after 10-12 years? I have no disability, very few issues, am so used to the shot I have a reminder set on my phone or I'd forget it- but my brain now tells a different story. I see a Nuero at John's Hopkins tomorrow to discuss it, my regular Nuero was floored and didn't know what to make of it, so is sending me to an expert.
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Re: Experiences with Avonex

Postby Avonexveteran » Mon Apr 15, 2013 5:33 am

I haven't heard about Avonex becoming less efective after 10-12 years. No wonder Newbie's neuro was floored.

My experiences with Avonex have been quite positive overall. Went on Avonex in 1996 after experiencing several bad attacks one of which required hospitalization and after failing Betaseron due to side effects. Got some Avonex side effects early on (mainly fatigue) but they soon went away. I no longer have any side effects, don't even premedicate. The injections are little more than a minor inconvenience . More importantly I have remained stable with no attacks.
I did experience some fatigue when when starting to use the the prefilled syringe. I quickly went back to original powdered form and remain on it to this day. I probably could have adjusted to the prefilled syringe but choose not do do so,
I get semi-annual blood tests and the liver function tests never showed any abnormalities. My thyroid has been slightly underactive which is corrected with medication. Also my WBC has been slightly low. but not enough to be alarmed about.
I expect to continue with the Avonex injections unless it stops working, I develop bad side effects, or a cure is found. All unlikely scenarios at this point. It looks like I will be on it for life.
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: Experiences with Avonex

Postby lolaramona8 » Mon Apr 21, 2014 12:32 pm

I have been on avonex for the past 4 years and I have not relapse since I've been taking the medicine.
I just recently switch to the pen, which is easier to use but just the noise it makes when you release the needle is just awful
As for the side effects, just flu like symptoms and horrible horrible shivers!! Feels like I am super cold, back pain and I don’t know if I am the only one but my skin hurts.
The next morning I feel like I am just hang over.
I feel tired, emotionally down, and with a minor headache.
The only thing I have notice that I actually worry is about the muscle lost in the injection are.

Other than that I just drink a lot of water and take Tylenol before taking the shot at night.
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