Avonex side effects?

[Jason732]

I had an appointment with a new neurologist yesterday and after a few surprising results in the exam, he suggested 3 things:
1. Another MRI of my brain and T-spine based on the symptoms I'm having.
2. Another 2 days worth of Solu-Medrol IV therapy based on the symptoms I'm having
3. Avonex.

I'm OK with the first 2 (although I'm terrified of MRI machines), but I was reading about the side effects of Avonex and I'm not too thrilled with "flu-like symptoms" or "feeling sad" alot. Can anyone shed some light how common these side effects are or share their experience with Avonex? I'm not sure whether to do it or not...

[Sassypants1980]

Hello my name is rhonda I was recently diagnosed with MS although my doctors have felt I have had it for many years it took a long time for it to be diagnosed.  My doctor when I was finally diagnosed with the MS immediately put me on the Avonex she also prescribed me me Motrin 800's and told me to take the Motrin one hour before my injection and it will help with the flu like symptoms and she was right I take the Motrin before my my once a week injection and I feel great. I have not had any depression with taking Avonex but everyone is different so if this is a major concern to you make sure you talk to your dr about it. I was just informed last week by my nurse that was training me on how to use my Avonex pen they came out with a every two week injection for the Avonex I will definately be looking into that the less injections the happier I will be. Don't be afraid to talk to your doctor about all your concerns that is what they are there for and best of luck to anyone that is considering being on Avonex it has changed my life

[chris300]

     My comment is simple.  I have Multiple Sclerosis and use Avonex.  My side effects do Not include Depression or Headaches.  They include Fever-like symptoms, Muscle aches/pains, and Fatigue.  All at a High level.  I've come to realize in time, that the Only thing that helps Me is Medicine.  Other Medicine that I take like : Hydrocodone, Alprazolam, and Imipramine.  Without Overdosing of course, i've felt that these are all that helps.

[Lbdis53]

Hi, I am changing from rebif to avonex because of the headaches,depression, etc. my neurologist says that because of lower dosage, it might have less of those side effects. But I just read about poss. Hallucinations, seizures and heart issues. What is up with that? Does anybody have info?

[ErinZoe23]

Hey! I just started my Avenox 4 weeks ago...and was pretty scared of the side effects from what i heard.

My first injection I was suppose to do half but the doc never told the Biogen pharmacy place thingy about that one so i just did the whole thing..took some IB before and after the injection then layed down and went to bed a couple hours later...waiting for the worse...lol

All that happened to me was a i woke up twice shivering and shakin my *** off ( soooo cold) but fell right back to sleep in like 10 minutes then iwoke up took my IB and was just groogy and fatigue all day  that was about it..o and emotional wise the first week i was a straight b i t c h lol i was very angry i dont know way but i was and i was sad for the next few days that went away after the second injectione tho  i just kept telling myself these aint my true feelings this aint how i feel this is the medicine and it will pass


2nd injection...same coldness shivering and headaches but the IB took cae or that and fatigue and ache for some part fo the day but still could do everything i did every other day

3rd and 4rth injection...just a achey alot and headaches ( just take IB and youll be good) no shivers

So im happy with that doesnt realy bother me at all considering what some people might be going through

My best advice is stay really positive about it and not to worry ..keep thinking to yourself it aint as bad as it seems and im going to be the one who gets no side effects! and just stay in that mind frame i think it helps alot

I still havent injected myself my mom does for me i just cant bring myself to do it and accept it yet but that will come with time  ( o and it didnt matter i did it all at once the doc and pharmacy said lol they were all happy i just went for it and did it and got it over with lol  but i dont recommend that you never know how your body will respond and should start with just half!!

[b125]

Hey Jason, I agree this is a great place to get advice from a perspective that your doctor or ms nurse can't totally give you. I am currently taking Rebif, which is the same in terms of meds as Avonex, but the injection is sc rather than im, and is 3x a week rather than 1x. I agree, read up on all the meds before you start - I didn't know much about them, so I just agreed with what the doctor suggested. I probably would have rather had the once a week deal though if I had known much about them! I think most of the DMDS now offer an injection device, which is up to you to use, but regardless of which med you choose, take advantage of the nurse training that they offer. If they don't mention it, ask, because it helps a lot!

The side effects are different for everyone, there's no way to know how you'll tolerate it until you start. I was scared by the same warnings of depression (any interferon has that warning), but so far after three months things are going well. Tylenol 8hr has helped a lot with my side effects - I don't have to take it all the time now, since my body is getting to accept the meds more. Probably good, since Tylenol is hard on the liver, and so are the meds. Make sure you get routine labwork to keep an eye on your AST and ALT readings, since they will show the impact the interferons have on your liver.

[LATW]

When the nurse comes to train you ask her to show you have to inject in your arm. It might be much less painful.

LA

[Jason732]

Thanks so much for the input and sentiment. It's always comforting to have support and you all have always been so awesome. I think I'm going to ask a few questions of my own to my Neurologist and, depending on the cost, try out Avonex. I'm going to have to just suck it up and make myself do the injections, but I'd rather do that than face the alternative. I'll do my best to keep you all posted on how everything pans out in the coming weeks, but I tend to get lost in my work alot so try not to hold it against me if I forget ;) (I'll do my best not to!)

[bellaf]

My friend was on Avonex for a little while but went off it as she said she felt quite ill and had bad headaches not to mention she could not give herself the injection.
I would recommend Rebif, i have been on it for 6 years, its very easy to use, comes with an autoject so it helps you do the needle yourself and had little side effects for me. If i took panadol one hour before the Rebif i would have no flu like symptoms and no problems. Ive just gone off Rebif so that i can get pregnant but as soon as ive had the baby im going straight back on it as i tolerated it well and it definately helped my MS in that i had less lesions and relapses.
Good luck

[Quixotic1]

Man am I glad you got a second opinion.  If the suspicion for MS is high enough, most experts (even the Mayo Clinic, lol) are advocating beginning a DMD.  The reason for this is that the drugs are more successful at slowing the disease the earlier they are taken in the disease.  That is, two years of a DMD at the beginning of the disease is more effective than 2 years done a year later.

MS should be treated proactively!  

My experience on Avonex has been a mixed bag.  I did have the muscle aches and stiffness from the beginning.  Mine was quite tolerable and responded to Tylenol.  At first it last about 18 hours.  But, the side effects lasted shorter and shorter times.  I would take the injection about 8pm and make sure I was primed with the Tylenol (Ibuprofen or naprosyn is better, because they are anti-inflammatory meds, but I am allergic).  By morning any side effects I had were over and I had slept through them.  I know I have them because when I get up to pee, I'm stiff and a little achey.

So that part is a no biggy.

But, I have seen, looking back through my posts and my diary, that I had quite a bit more depression since starting the Avonex.  I have chronic depression anyway, but it was worse.  That has not improved.  It's not a huge deal, no major depressive episodes, but my mood and outlook is more grim on the med.

I can see that I am in the minority in the depression category.  I do think I have never quite come to terms with the loss of my career.  And I take other meds for which depression is a side effect also.

Glad to see you back and glad to see you are in the hands of someone being very serious about your symptoms and your future!

Quix

[LATW]

I've been on it since February of this year.  I do get flu-like side effects still.  But they do not last as long now. Maybe 48 hours.

I did have to go on an anti-depressant for the first time in my life. But I can not say it was Avonex alone that caused the depression.  I think the mix of being dx'd with MS, the loss of some of my function, and the medications all mix together caused depression.  Add the stress of having to take care of a family of 5 children while being miserable myself onto that and I am thankful for Prozac! :-)

LA

[Jason732]

Hey Shelly!

Yeah it's been a while, but I'm working my tail end off here trying to make ends meet ;) it's all good though!

My story to this point is this (in a nutshell):
In February I started having symptoms. Didn't know what it was, so my PCP ordered the MRI of the brain/c spine/l spine. Results came back with the report and the neuro that shares an office with my PCP happened to see it and talk with the radiologist. He then had his secretary make an appointment with me. I went in, we did some tests, tried Prednisone (didn't work) then did an LP, positive for O-Bands, ordered 3xdays of Solumedrol and symptoms started improving rapidly. It was all down-hill from there, though. He stopped listening to me when I told him what I was feeling. I dealt with this for the last 5 months and finally decided to go get a second opinion from this new place.

This new neurologist that I went to see is actually specialized in MS and they are very proactive when it comes to treating MS. Although I had to explain the whole story start-to-finish to them, I still felt like they were trying to listen to what I was feeling more than just make a judgment based on my lab results and MRI films. They didn't beat around the bush or sugar-coat anything. He told me to expect this to be MS. He told me that he wants me to start Avonex or another DMD (although he didn't say anything but Avonex) as soon as I was done with the IV therapy. He said that he was surprised that my other neuro didn't order an MRI of the T-spine due to the rib pain I was having, but that he wanted to see the t-spine and brain again because he suspects that there are lesions there now that weren't before, which are causing my current symptoms of fatigue, hearing problems, memory issues, rib pain, etc.

[sllowe]

Hi Jason,

Welcome back.  Well, seems like you've been given more certain info than in the past, huh? I know you were on the fence in the past about getting new MRIs, etc. Right? Please, if you like, remind all of us briefly, what you had and have going on.  I do remember you being treated w/the steroids as the last thing you had going on.

I'm on Rebif, which is an interferon too and I got the flu-like symptoms, but if you are like most, it will fade as time goes on. Like Heather says, it does mess with your mood.  I notice it and it's something your neuro should be able to give you some insight on.  It's important to watch out for depression.

Tell us if you like this neuro etc. as compared to what you've been through in the past. I'd like to hear more if you want to share.

ttys,
Shelly

[Heather3418]

I have experience with both Avonex AND Copaxone.  I took Avonex for three years.  I DID have the flu like side effects for 3-4 days after the shot.  Unfortunately, the side effects did not wane, so after 3 years I gave up on it.  It was an excellent drug at preventing any progression of my MS and no more additional lesions on MRI.  

I am now on Copaxone, which was chosen due to no flu-like side effects.  Taking a daily shot is really no big deal.  I have been on it for a year.  I still have some little welts from injections and sometimes some itching for a few minutes after injection.  After any slight injection site reactions, I wouldn't even know that I was taking anything for the MS.

Here's the catch...at least in my opinion.  I have had two relapses while on Copaxone.  One I believe brought on by stress alone, since it happened right after my father died.  No one will convince me otherwise, that his death was the reason for my flare up.  Now 9 months later, I am back in another relapse with new symptoms, for the first time in 13 years since diagnosis.  I am due to have another brain MRI in a few days.  If at that time I see a real change in my MRI despite being on Copaxone, I will swallow hard and ask to be put back on Avonex.  The side-effects were worth me being stable in my course of MS for three years.  I'll put up with that.  Effectiveness is what I am looking for after all.

I did NOT notice and "sadness" while on Avonex, although I am prone to depression.  I was on an anti-depressant at the time I was on Avonex, so that may have prevented any depression or sadness.

When you are deciding on a DMD, you have to go with what you and your doctor feel is best for you.  Sometimes we have to live with the side effects to try and put a halt or slow-down to this disease called MS.  We have to do what we have to do.

It will always be YOUR decision and you may not have any problems with any of the medications.  Research all of them carefully and weight your options.

Let us know about your MRI and what you and the doctor decide to do, okay.

Best Wishes,
Heather

[essdipity]

I've been on Avonex almost 5 months and am doing fine. I suppose some people find it makes them depressed, but I don't recall anyone here talking about depression with Avonex. As to the flu stuff, it can be minimized. I'm very fortunate in that regard. I do my shot at night, then take an Ambien and an Aleve, and go to bed. I sleep through anything that might be going on and wake up feeling fine. That's just me, though.

Before Avonex I was on Copaxone. I have to disagree with Lulu about no side effects. The first month or so was fine, but after that I began getting hives, bumps, lumps, rashes and horrible itching. The bottom line is that I developed a severe allergy and had to go off it. Virtually everyone here who's on Copaxone is contending with bumps and itching to some extent, but far far less than I had.

So everyone is different. If you can't tolerate an interferon like Avonex, there's always Copaxone.

My advice is to read up on all the DMDs, and talk it over with your neuro before making a decision. But also remember that the decision doesn't have to be a final one.

Best of luck,
ess

[Jason732]

Thanks for the feedback, it really helps. I'm not "officially" diagnosed yet, but I have an MRI on Monday next week and the Dr. is "fairly certain" we're going to find at least one more lesion, but until that happens I'm in the undiagnosed but "Probable MS" category. They are having me do my next MRI in a "3T" machine to be as thorough as possible, I guess the more "T" an MRI machine has, the better. Anyway, if the side effects can be managed, then I'm not so intrepid about going with Avonex if my insurance will cover it, but I was told that most insurance companies won't cover MS treatments without an actual diagnosis, so we'll have to see what happens.

[Lulu54]

Hi Jason,
Avonex was not an option for me from my neuro so I went with copaxone, a daily injection of a totally different type drug with no side effects.  I passed on the Rebif because it has the same side effects as avonex, but is injected three times a week.  If avonex, with its once a week injection had been an option I would have seriously considered it instead of the copax.  

There are a number of people here who take Avonex and I'm sure they will be along to share their experiences with you.

until then, keep pondering the idea,
Lulu

[JonM]

Are you DXd with MS?

If you are you should definitly be on a DMD.

I take Avonex, and Yes I do feel cra**y for 24-48 hours after the injection, but its far better than the alternative.

Most Avonex users see their side affects lessen over time and the SAs are controllable with Advil and Tylenol, so you should do it.

Avonex is an IM injection and is taken once a week.  It has the lowest rate of all the different interferons of developing nuetralizing antibodies, roughly 5-10%.


Hope this helps.
Jon

[doni54]

I didn't care much for the MRI, myself.  I just went with it like sllowe told me to and made it through.  

I am undx, so I haven't had any experiences with the Avonex.  I am sure someone who has will post shortly.

I'm not familar with your story, are you dx? If not, it sounds like your dr is leaning heavily on an MS dx.

Good luck and hang in here, someone will pop in here with some answers

doni