Avonex Long Term

[TBaraw]

Has anyone here been on Avonex for years? Like 5 or more? How has it been? Side effect wise and MS flare wise? I took this briefly 13 yrs ago and am considering going back on it -- I'm just so uncertain of these MS drugs as I think are a lot of people...thanks for any input...

[TLC_31]

I have used Avonex since April 2004, almost nine years. It seems to be doing its job; I had relapses in summer 2004 and in early 2006, each requiring three days of IV steroids plus a taper. My MS is not apparent to others.

I hate shots, especially self-inflicted. So in November 2011 I did use Gilenya for 19 days. The side effects were intolerable for me, and I returned to Avonex after seven weeks off. However, I haven't self-injected since summer 2011.

The flu-like side effects were more intense the first couple weeks after resumption, much as they were when I originally started. With hydration, pre-medication with acetaminophin and another dose usually before bed, I have few issues. I normally have injected on Friday or Saturday evenings, but I've done it other days and hours with no problems.

Ask questions anytime!

[dm0329]

Avonex pin-cushion club member since 1997

I've been self-injecting Avonex since September 1997 (OMG. . .I'm a huge needle weenie too. . .I still can't believe it!). I was dx with MS in 1994 (Betaseron was dispensed via lottery) back then it was basically "diagnose and adios." The diagnosing neuro basically said "young women typically do really well" and "don't need to see you unless you're feeling bad or something comes up." Boy, how times have changed, huh?

Three years later (1997), he saw me again when I was having vision problems (lesion on thalamus). My follow-up MRI showed TONS of new active lesions and he wanted me to start AVONEX ASAP. He was "so freaked out" by my aggressive follow-up MRI scan (3 years later yet no visible symptoms or known flares to bring me to the neuro), he told me I was LUCKY THREE TIMES! The "scare" has kept me "poking" for more than 15 years now!

Avonex just hit the US market in 1996, and I started injecting in 1997. It was the powder-filled mix it form, I recall how awful the first three months were. I thought my life was over as Avonex really knocked me down every weekend. But, I persisted, and the side-effects lessened.

Only to return, when I started the pre-filled injections (2003???) but again, over time, my body adjusted and the symtoms lessened. Some weeks, the side effects return, but mostly it's really nothing but a "nuisance" as I'm still a HUGE NEEDLE WEENIE! I've never tried the Avoenx pen, I'm so used to the slow stick it ways, I'm actually afraid of being "harpooned" so to speak.

It's almost my 16-year anniversary on Avonex, but my 20-year MS dx anniversary will be this March! Over the years, I've had a few mild relapses (optic neuritis 2003 and left-side numbness/tingling 2007), but my MRI's have been stable.

Avonex: Stick With It (pun intended)

[TBaraw]

Thanks for the reply -- sounds like people do very well on Avonex for yrs...I worry about the long term effects....no problems with liver functions I assume? My neuro suggested Copaxone -- I don't like the thought of every day injections that's why I was reconsidering the Avonex --

I was symptom free for 10 yrs & then my appendix burst back in Oct--bad infection and wouldn't you know -- a bad flare was next!

Thanks again for the info -- gives me something to think about...be well!

[BigA]

I'm on it 3 years and I'm doing well. But generally, you never know if it's working. If you ask people who are on it 10 years, you'll only hear from people who maybe would have had more relapses but maybe they would have done well anyway.

Alternatively, it reduced exacerbations by 1/3 in the trials. That may mean that it reduced by more in some individuals and none in others, so it may work for some of us.

[Shellyrock]

Avonex 10 years

I was diagnosed with MS in 2003 (Michelle, Sydney, Australia). I chose Avonex as my treatment - thought it was best to have a deep injection once a week, with one day of side effects and then i felt normal. I was good on this drug for 10 years - no major relapse - a minor one when i drank Coke Zero! I try not to have anything now with Aspartame in it - a sugar substitute...Even though i brought Avonex into my world and was good on it for 10 years, last October 2012 i had a major episode where my legs and abdomen went numb. I was hospitalised and it was found that i had low vitamin D levels (coming out of winter here in Australia - a time when most Australians have low vitamin D levels!).

After such a major episode whilst on Avonex, my neurologist has started my on the new Gilenya tablet. I have to say that 4 months Avonex and the routine it gave me - my weekly injection night - ill feeling the next day - but back to feeling good after that til the next injection. i love Avonex.

[RoyalOne]

In all the years that I have been taking Avonex I only noticed fatigue for a day or so after the injection early on in therapy. This side effect would wax and wane for about a year or so. It seemed to vary depending on other factors such as heat and stress. After that I would get no side effects at all, didn't even premedicate.
I did get some fatigue when I started the pre-filled syringe. I promptly switched back to the original powdered form. All this happened many years ago. Its hard to remember specifics. Its possible that I could have gotten used to the prefilled.
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. I don't know if this is Avonex related or not. Also my WBC has been slightly low. but not enough to be alarmed about.
I have had no flare-ups since on Avonex and have remained stable.

[triniti]

Avonex and infection

Hi I am new here to the board
I have a question regarding Avonex.
I was dxed in 2007 and was on Copaxone for about 3 yrs and had no improvement.
I took Rebif for a short time and then Avonex. A few months after I was taking it, I got very sick with a lung infection and had to have surgery.

As it turned out, it was hystoplasmosis. My doctor wanted me to see an infection control doctor and he did not want me to take the Avonex.. thinking that it might have caused me to be subseptable to the infection.

My neuro disagreed and didn't feel like it was a risk to take it. To be quite honest, I have been very nervous about taking the Avonex ever since this occured.

I was so sick and fear I will get that sick again. Has anyone here had any issues with infections while taking Avonex? I would apreciate any feedback on this. Thank you so much for your input!
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Justsayyes]

I haven't had problems with infection while on Avonex, but don't know enough about hystoplasmosis to offer any insight. Too bad that the docs don't agree. Did you ask your infection control doctor what he/she thought?

If you were off the Avonex for a few months, why would it be implicated in contracting a fungal infection? I am very curious about how the docs thought you contracted the infection. I have a resident bat that leaves lots of guanno on my deck, and know that it is a risk for hysto.

[nice man]

iuse avonex 8y

I was diagnosed with MS in 2003 (Michelle, Sydney, Australia). I chose Avonex as my treatment - thought it was best to have a deep injection once a week, with one day of side effects and then i felt normal. I was good on this drug for 10 years - no major relapse - a minor one when i drank Coke Zero! I try not to have anything now with Aspartame in it - a sugar substitute...Even though i brought Avonex into my world and was good on it for 10 years, last October 2012 i had a major episode where my legs and abdomen went numb. I was hospitalised and it was found that i had low vitamin D levels (coming out of winter here in Australia - a time when most Australians have low vitamin D levels!).

After such a major episode whilst on Avonex, my neurologist has started my on the new Gilenya tablet. I have to say that 4 months Avonex and the routine it gave me - my weekly injection night - ill feeling the next day - but back to feeling good after that til the next injection. i love Avonex.

iused 8y avonec and now use too
ahadd attack but i,m goodnow
best attacked tomy face eapecially eye