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Avonex

USER REVIEWS

Comment from: natural girl, 55-64 on Treatment for 6 months - 1 year (Patient) Published: February 02

I was very lucky to have had a great nurse to show me how to inject myself. She gave me great advice about dealing with flu like symptoms. On the day of my shot I drink lots of water throughout the day (about 3 sports bottles full) I refer to it as "water boarding" that one day. I take the AVONEX out of the fridge 2-3 hours before injection. I make sure I have food in my stomach, then take 2 aleves 1 hour before shot, use ice in a ziplock bag on my thigh for about 20-30 minutes. Now that I use the shorter needle it is much less scary to give myself the shot. It is important to do this routine similarly each week. The ultra hydration helps tremendously as does the aleve. Now I only experience a little tiredness for half the next day, the flu-like aches and pains are virtually gone; I believe because of the water. Don't get me wrong I still freak out a bit everytime I have the needle in my hand but I just tell myself this is no big deal and I get through it. A positive attitude certainly makes all of this easier.

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Comment from: 45-54 on Treatment for 1-6 months (Patient) Published: December 28

I was diagnosed with MS 4 months ago and started on Avonex. I have had mild flu-like symptoms, slight irribility the next couple of days after my shot, bruising on my legs from the shots. My legs are more sensitive for some reason than my arms or hips. Now, I don't have to deal with the flu-like symptoms as long as I wait until bedtime to give myself the shot. I also take 2 Aleve about an hour before I give myself the Avonex injection. I usually wake up once or twice during the night, but feel ok, maybe a little achey. If I do, I just take 2 more Aleve. The other thing I found that helps me sleep through the symptoms is an electric blanket. I just put it on Low and go to sleep. The warmth helps with any flu-like achey muscles and there is no side effects! The thing that bothers me the most is that I have been experiencing some hair loss. Not too bad yet, but if it continues, I will probably ask my doctor if I can switch meds. The last thing I can think of that might help is that my doctor gave me a prescription for Lyrica 75 mg to use for nerve pain. I use it as a pain pill, not a medicine to take routinely. That way when I really feel like I can't stand my nerves burning in my leg, foot, etc., I take 1 Lyrica. My PCP put me on it this way and then my neurologist confirmed that he had also placed patients on Lyrica to use just for nerve pain (as needed) and patients were reporting good results back. I know it's important to stay healthy, especially our livers, so the less medicine the better! I know I've written a small novel, but hopefully I have helped someone.

Related Reading: avonex | hair loss | lyrica

Comment from: 35-44 Female on Treatment for 1-6 months (Patient) Published: June 17

I was diagnosed in June '08. Steroids only til Jan. '10, when I had my second attack. Now, I have been on Avonex for about 5 months. I just had my first MRI since starting the medication. I have no major changes since Jan. '10. I even had one legion healing according to my doctor. The self-injection is a piece of cake for me, it does hurt a bit, but its better than being in wheel chair. I take 800mg advil prior to my shot. Stay positive and do what your doctors says. This is not the end of the world, for any of us.

Comment from: denescacchetti, 45-54 on Treatment for 10+ years (Patient) Published: December 07

I hsve been on this drug since 1990 when it was still in clinical trials. In the begining the flu like symptoms were bad. Took Tylenol one hour before injection and went to bed for the night. Woke up feeling sluggish and tired but after all these years I can take my injection anytime in the day and be fine. For those people struggling with the side effects all I can say is tough it out. It DOES get better and it IS worth it! In almost twenty years I have had about 6 mild attacks. None of them even bad enough to effect my everyday living. Compared to how I was the prior 10 years when I didn't know what was wrong with me I can tell you that I would be totaly crippled without it. There was a point before the medication that I couldn't walk. I am still completely ambulatory and now have severe arthritis. If anything is going to cripple me it arthritis not MS. Stay with it! The injections are hard to deal with but everytime I inject with that long needle I tell myself that it's this or a wheelchair and it gets me thru it. If you have someone to help you inject, try your hips. Much better and less pain. Please stay with it. It's the best drug out there!

Related Reading: tylenol | arthritis

Comment from: Avonex veteran, 55-64 Female on Treatment for 10+ years (Patient) Published: June 25

I have been on Avonex for fourteen years. Had previously tried Betaseron but had to quit after a few doses due to side effects. Since on Avonex I have remained stable with no attacks. This was confirmed by a recent MRI to check for progression. The MRI came back negative with no active lesions. I no longer have side effects at all, don't even premedicate. Had some side effects, mainly fatigue, when I first started therapy. They dwindled over time and soon went away. I should add that I did get some side effects when going to the prefilled syringe, so I quickly went back to the original powdered form which I remain on to this day. In summary, I am very satisfied with Avonex. It has kept my MS at bay. Self -injecting has become little more than a minor inconvenience with virtually no side effects

Related Reading: betaseron | fatigue

Comment from: Scrambled Brains, 45-54 on Treatment for 10+ years (Patient) Published: December 30

I have been injecting Avonex since the spring of 1997 and I truly credit this medication for enabling me to lead a productive life nearly free of MS exacerbations. The exacerbations (2) since beginning this medication were mild in comparison to the pre-diagnosis episodes. Coining the phrase" I have MS, but Ms does not have me!"

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Comment from: TOYOMAN, 45-54 Female on Treatment for 5-10 years (Patient) Published: September 22

BEEN USING AVONEX SINCE INITIAL DIAGNOSES 8 YRS. AGO. STARTED WITH MIXING NOW USING PREFILLED SYRINGES. SIDE EFFECTS MINIMAL AND ONLY OCCURRED DURING INITIAL START OF MEDICATION AND WHEN BIOGEN SWITCHED TO PREFILLED. NO PROBLEM WITH INJECTION CONSIDER WAY OF LIFE. AT 50 YEARS OLD HAVE BEEN WORKING OUT AND MAINTAINED HEALTHY LIFESTYLE FOR 15+YEARS. RELASPING RECURRING WITH NO SIGNIFICANT PROGRESSION SAYS IT ALL ABOUT EFFECTIVNESS OF DRUG. WOULD NOT CONSDER SWITCHING TO ORAL AT THIS TIME, SIDE EFFECTS SOUND MORE SEVERE.

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Comment from: Sasha, 35-44 on Treatment for 6 months - 1 year (Patient) Published: September 23

Avonex made me feel really, really bad for first 2 months. Fever, nauseous, dizzy and aches all over by body. But after that, I felt fine. Everything ended. The shots use to bother me a lot because I wasn't use to the long needle. But now it's a piece of cake. I like taking it once a week instead of everyday like Copaxone. No bumps are bruises from Avonex.

Related Reading: fever | copaxone | bruises

Comment from: 25-34 on Treatment for 5-10 years (Patient) Published: November 01

I have been on Avonex for nine years and have very few relapses. The side effects lessen over time.

Comment from: a_krausa, 35-44 on Treatment for 5-10 years (Patient) Published: February 07

I am back up on my feet and walking again.

Comment from: NYC, 35-44 Female on Treatment for 5-10 years (Patient) Published: May 30

I am just coming up to 5 years on Avonex. I have been fortunate in that the two company's I have worked for during this time have a medical centre so I have a nurse administer the injection. I still can not get my head around doing it myself. This is an issue because I feel dependent on someone else and often makes me wonder what I will eventually have to do when this facility is not there for me. Still have side effects, mostly muscle ache, which tends to vary week-to-week. 3 tylenol about an hour before and for the next day tends to help a great deal. I have not had a flare up as bad as the one I had shortly before being diagnosed. That said, I can't tell you it is because of Avonex. In the last few months I have felt more lethargic and fatigued. Again, I don't know if this is due to Avonex or the fact I stopped smoking pot and started Lexapro, which I am also starting to ween myself off of. I am currently considering stopping Avonex as well to see if I can live/cope with no medication what so ever. Overall, I cant say it is not helping so would suggest you go with your doctors advice. What ever you decide I wish you luck and, remember, you are not alone.

Related Reading: tylenol | smoking | lexapro

Comment from: wayne, 45-54 Female on Treatment for 5-10 years (Patient) Published: January 19

i have been taking for almost 6 years first year was bad chills. learn to stay warm before an after shot. i drive truck an have good an bad days just learn to pace yourself but do not baby yourself you have to push harder to keep going learn not give up are lose faith.i give my shot in the leg rotating every week,i do beleive it helps but i keep my faith an dont stop working keep pushing myself,i am 50 years of age,please i repeat dont give up keep pushing

Comment from: Yoyo, 45-54 on Treatment for 1-2 years (Patient) Published: April 12

Diagnosed in 2008. Started out on Copaxon - had 4 flare ups and no changes to lesions. Started Avonex 1 year ago, lesions are smaller and no new ones! Injections hurt - but my husband gives to me so we can rotate sites. Flu like symptoms are lessening but not gone yet. Fevers/Chills - take tylenol. Headache (pretty bad) take darvon due to many allergies. Drink lots of water, take at 8:30 p.m. and crawl into bed for about 12 hours. Would recommend Avonex. Reactions to steriods are worse!

Related Reading: flu | headache | darvon

Comment from: sunwindandrain, 55-64 on Treatment for 5-10 years (Patient) Published: April 02

I have had MS for over 30 years. I took Avonex for close to ten years. Originally I improved on it. In the last two years, the flu-like side effects would NOT quit . . . and I was getting 4 exacerbations a year, Overall, I was deteriorating--to the point I started handicapping the house. Two years ago, I switched to hyperbaric oxygen and low dose naltrexone . . . and I have not looked back. I have gone from not being able to walk from one end of the house to the other to hauling concrete blocks around the backyard.

Related Reading: avonex | flu | naltrexone

Comment from: Avonexveteran, Female (Patient) Published: October 05

I am a true Avonex veteran, been on it over fifteen years (since June 96). I had several exacerbations prior to starting Avonex. The latter one landed me in the hospital and on steroids. Had some Avonex side effects early-on but they soon went away. More importantly I have remained stable with no attacks since on the drug. Now I self-inject weekly and its little more than a minor inconvenience. I know some can't tolerate Avonex , but for me its been a godsend. I fully expect to be on it indefinitely, probably for the rest of my life. But that's OK with me and far better than the alternative!

Comment from: SISTA, 55-64 on Treatment for 5-10 years (Patient) Published: June 13

I have been taking Avonex for 9yrs. I was diagnosed in 1990 & went on AVONEX 2002. I have not had a major exasserbation since being on avonex, but it seems side affects are getting really worse over time, has anyone else had this prob? I really do not want to have to stop.

Comment from: mcadoo, 25-34 Female on Treatment for 2-5 years (Patient) Published: August 30

Hello all - So, I have been on Avonex for 2.5 years now and it is working well for me but the reaction following injection is awful. I was diagnosed when I was 12 years old I am now 32 - My father is also my doctor so I have been in a unique position to try different rx's to combat the pain and flu-like symptoms; I have tried them ALL, stuff no one else would give me, but my dad did and with everything I tried, all of the prescriptions I tried for me 2 Aleve, Naproxen Sodium taken 1 hour before inj. works very well, also stronger things work even better in combination but some docs will not do it, Lortab, Norco, Vicodin etc. I take 1 Lortab also when I get my shot, it works great and I am hardly effected. I tried tylenol, motrin, all of the antipyretics (fever lowering meds)and none of them work as well or as long as the Aleve, be careful with your stomach - buffer it with some milk or ice cream or a couple of tums or prilosec etc. Also- I don't know if anyone has this but I ALWAYS have an elevated temp now that I am on the Avonex. If I get off it, discontinue therapy for a time, which I have, the temp goes away, does this occur with anyone else? Thank you all.

Related Reading: naproxen | norco | vicodin

Comment from: 25-34 on Treatment for 6 months - 1 year (Patient) Published: October 27

So far so good on Avonex. Just diagosed in January so this is my 1st treatment drug. I have gotten use to the injections, just another part of my weekly routine. I have regained a more normal walking ability since taking Avonex so that is great!! The once a week injection is more convenient than the others, everyday or 3 times a week. The flu like symptoms have all but gone away. Mostly I feel very drained the day after my shot but it's totally manageable.

Comment from: abc, 45-54 on Treatment for 5-10 years (Patient) Published: March 29

I have been on and off Avonex since early 2000; it's now early 2008. (time on 4-5 years) I was on and off because I had 3 pregnancies/2 babies. I had good results and I tolerated the symptoms well until I went on again after my second baby's birth last spring. The flulike symptoms are bothering me now; maybe partially because I'm so sleep deprived with the new baby. I also had a flareup and new lesions on a recent mri so my dr. wants me to go on Rebif now.

Related Reading: rebif

Comment from: Sherif Nashaat, 25-34 Female on Treatment for 1-6 months (Patient) Published: January 16

I was diagnosed since a year. I started taking Avonex as my first medication 5 weeks ago. I didn't take any thing else before then. The first time injecting it was by my mother, I wasn't comfortable to self injection so she just pressed the needle in my thigh and i continued the injection to prove to myself that i can do it. The second time i did the whole injection process by myself and then it became like a piece of cake. There is a trick that you can do to easy injection which is; compressing the part that you are going to inject with your fingers to gather your senses on the compression process not when the needle is getting in. Regarding the Side effects; i had a rise in the body temperature and body shakes for a couple of hours. These side effects are nearly vanished in the last injection (5th injection). I take 2 Panadol tablets before injection by one hour and anothor two after 4 hours. As i am still new to this medication i can't comment on its effectiveness but i hope it would be really helpful.

Comment from: CBKC, 25-34 on Treatment for 2-5 years (Patient) Published: April 10

Due to the severity of my MS I can only inject in my legs and I numb my legs with ice prior to injection. I rotate my injection site every week to let my legs recover from previous week. I let the prefilled syringe set out in room temp for at least an hour prior to injecting per instructions. To decrease some of the side effects the next day, I usually inject on Sunday night and then take two advils. Ask your doctor if you can also receive the smaller gauge, which is a smaller needle(25 inch rather than the 23 1/4 inch)it is alot nicer. This medications has only helped to decrease my major attacks, but I still continue to have alot of pain. These techniques I have described does help with using this medication and I hope it works for you. I wish you the best!

Comment from: Stephanielg, 25-34 on Treatment for 6 months - 1 year (Patient) Published: September 23

The first 6 months or so were a bit difficult for me - but definately doable. I took Avonex on Friday nights at around midnight or 1am before I'd go to bed. I eventually realized that I was dumb for doing that as it would effect my Saturday quite a bit (I was very lethargic) For the past few months I've done the injection at around 6 or 7pm instead and it's gotten a LOT better. My body is getting used to this medication. In two weeks it will have been 1 full year since I've been on Avonex. I hardly even feel the effects. Last weekend I woke up in the middle of the night with chills and a fever. I took three Aleve and fell back to sleep. The next day I could go about the day as if I hadn't taken anything. To those who haven't taken Avonex yet, but are considering it I say to NOT be scared. It sucks for a while, but if you're strong and just take it easy you'll be fine. :-) I hardly even think about my injections now except for on Friday - and that's a HUGE leap for me. I haven't had a relapse since I've been on Avonex.

Related Reading: avonex | fever

Comment from: 45-54 on Treatment for 10+ years (Patient) Published: January 04

I have been on Avonex since 4/1998. I am now on the prefilled syringes,but have been approved by my Dr. for the 25Gauge (1 inch) needle which makes the injections more torelable. This is due to the fact that I have a smaller frame. The 23Gauge (1 1/4 Inch)that comes in the prefilled honestly hurt too much when I injected. I have not had any exasberations since 1998, thank God and my lesions have lessoned with no new ones appearing. This Avonex had been wonderful in keeping my MS under control. Never had Flu-like symptoms until I started having problems with my old pharmacy. I changed pharmacies and have not had any since. I believe they didn't refrigate it properly. Also started giving it early in the a.m. like at 9:00 and that really helped. Read that in MS Focus Magazine. I hope this info helps everyone & good luck to all.

Related Reading: flu

Comment from: 45-54 Female on Treatment for 6 months - 1 year (Patient) Published: October 22

this is new to me. I have nothing to compare with. I just hope it works.The drug cost way to much. It should be availible to everyone.

Comment from: JohnnyP, 65-74 Female on Treatment for 10+ years (Patient) Published: November 12

Diagnosed w/MS 1984. Since starting on Avonex 10+ years ago I've had no flare-ups. Insurance pays for it. Here's how I take the shot. One hour prior take 5 mg of Prednisone per Neurologist recommendendation. Let injection stay out to room temp. usually one hour also. When taking the shot I wipe the site with the alcohol and then set up the needle. I put my fingers around the site of the injection and then shake it while I inject. This distracts me and I feel no pain and my attention is distracted enough not to focus on the needle or any pain. It works. I recommend Avonex highly.

Related Reading: prednisone

Medical Editor: John P. Cunha, DO, FACOEP

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