Thinking of getting off Avonex

[Torsey104]

I have been taking Avonex for the last three years. Was on Copaxone for 5 years but had a flare up and new MRI and three new lesions on spine and neck. So neuro put me on Avonex. Seems to be doing the job. My last two MRI's have been clean (thank god) I can deal with the minor flu like symptoms. But it's the mental feelings of doom and gloom which go on for a couple of day after my shot. I have a history of anxiety and mild depression but this is like nothing I have ever experienced. After about three days, it's like a veil is lifted off my face and things start to look okay again. I've talked to my husband about getting off it all together but I'm nervous about reoccurring relapse. I'm interested in knowing if these feelings happen to others? And thought about getting off Avonex. Thanks so mych

[MSer102]

The interferons usually aren't good for people who already have anxiety and depression. If you would like to try for better effectiveness and trade for different side effects you could stop Avonex and try one of the oral medicines or Tysabri if you test negative for the JC virus which is the one that causes PML.

Unlike a few years ago there are now more treatment choices for people who can't tolerate the interferons. You can read up on the other medicines and be ready to talk to your neurologist at your next appointment about making a change.

[Torsey104]

Thanks MSer102. I will research other new meds and also talk to my doctor about switching. I really appreciate it.

[Special Kay]

I took Avonex for 6 years and had very good results, MS-wise. I never got over the flu-like symptoms, though, which had me feeling lousy for 1-2 days a week. Obviously I could deal with it to a certain extent or I wouldn't have gone on so long!

But what had me switch was that I felt that, over that whole time, a darkness was very slowly closing in on me. It was gradual, but I realized that I felt increasingly disconnected from myself and that I was losing interest in things and losing engagement with life. A kind of sub-acute depression, I guess.

When I described this to my doctor, she said some of her patients felt similarly on the interferons. I now take Tysabri and feel much better on a day-to-day basis (and no flu symptoms!).

[PhiSiggyro]

I had the same feeling when I was on avonex in regards to like your head not being into it and just feeling out of it all of the time. I was only on it for 6 months before having a monster flare and switching to tysabri but after I switched I felt much better

[Torsey104]

Special Kay and PhilSiggyro. You have me in tears as I read your thread. That's exactly how I feel most of the time. I was always a very outgoing, upbeat person with many interests. But now I have little interest in anything and it makes me so sad. My husband has been so worried about me because he has watched me gradually lose interest is just about everything. I always blamed it on my anxiety but I has always had anxiety and just dealt with it never letting it hold me back. I've tried everything from yoga to anti-depression medication to herbal remedies and nothing improves. Then last week it occurred to me that maybe it was the Avonex. When I was on Copaxone, I don't remember feeling this bad. I am going to talk to my neurologist about switching to Tysabri. Thank you both!!

[Special Kay]

Best of luck to you. There are so many options now when it comes to DMDs that you should not have to bear such heaviness.

[Torsey104]

Thank you and thank you for your kind words.

[MallyCT]

Holy cow! I just read all of the responses and they sounded so much like my own experiences on Avonex. I honestly began to accept that this was how I was supposed to feel once diagnosed and a couple of years into MS. Weekdays I was often very foggy at work and weekends I could easily spend an entire day (and night) on the weekend just sleeping. However, I did well on Avonex until a recent bout of ON and the subsequent MRI showed that it was probably time to switch meds. I have been on Tec since early July and feel pretty good. It takes getting used to but I do not feel foggy and sad and can make it through the weekend without 12-hour "naps." (For what it's worth, I should add that I take a very low dose of Paxil for anxiety and have been on it prior to my diagnosis.)

I wish you all the best. Sometimes the research can be daunting -- hang in there. Ask questions here and on the other threads for medications. Remember, everyone's body will react differently and their experience may not speak for the majority -- I don't mean for that to sound snarky.

[Torsey104]

Thanks MallyCT. I really appreciate all the feedback. I do have one more question about getting off Avonex. About how long did it take for you to start to feel like yourself again? I'm thinking of not doing my injections for a month and see if I improve mentally.

[MallyCT]

You are so welcome, Torsey! In response to your question, honestly -- I have no idea! Never gave it a second thought but now that I am, I don't think it took me too long to feel better mentally/physically. (But that is ME...may not be everyone else's experience.)

Keep asking questions!