Very interested to hear..

[wally8]

your thoughts on Avonex. I am so glad to see these new sub forums on the interferons.
I was doing research into which of the DMD's i will go on and was quite surprised that the interferons were not included in the meds and treatments forum

Anyhoo I think I have narrowed it down to Avonex, my reasoning being the once a week shot opposed to daily and I am still too nervous to take the daily pill for me it hasnt been around long enough to elay my fears.

My question is to those of you who are on or have been on Avonex, could you let me know what your experience has been so far and any info you may have come across that might help me in my final decision.
Thanks
Kathy

[TLC_31]

I have used Avonex since April 2004. Shot #428 will be this weekend.

Many folks moan about the side effects, and yes for a few months I didn't feel too chipper on Saturdays, sometimes Sundays. These days my weekends are almost always unaffected by side effects. I do use two or three doses of Tylenol/acetaminophen every weekend.

I hate the needles, even though most times when I'm done, including the first shot, I think if not say, "that wasn't so bad!" But I haven't self-injected since last September. Until then, I rotated the tops and sides of the legs consistently, and sometimes others did the arms. If my girlfriend were to leave me I'd have to try the Avonex Pen. As a trained medical assistant she can do my backside, and we rotate that and the arms. I usually have shots on Friday or Saturday evenings, depending on other scheduled activities, although I've done other days and other times of day with little to no adverse effects.

My hate for needles steered me to Gilenya for 19 days last fall, but the effects on my heart were intolerable, perhaps dangerous. (Many people do have good results.) It was nice that I could go back to Avonex after seven weeks off.

I had relapses in summer 2004 and in early 2006, each requiring three days of IV solumedrol with a prednisone taper. I have maintained a benign case, and many people that know me don't realize I have MS, or they forget I have it.

Would Copaxone or any other DMD have worked better? Worse? There's no way of knowing. But at least it seems Avonex does work, and after the experience with Gilenya I'm not just going to rush to BG-12 or something else new and exciting until it's stood the test of time.

Ask questions anytime!

[dm0329]

15 years on Avonex

I've been self-injecting Avonex since 1997 (dx in 1994 but no DMD's back then; Beta dispensed via lottery; "wait and see" tx; diagnose and adios). But, three years later, I had problem with my vision (lesion on thalamus which caused blind spots in vision field).

3-year follow-up MRI showed much lesion progression (but silent). My neuro said "I was lucky" three times to me in trying to explain my progression. He said "start Avonex" as soon as possible. Scared me enough to start and keep on treatment.

BTW, I'm a HUGE needle weenie; yet have managed to give myself intra-muscular injections for 15 years! I've had a few mild relapses (ON, left-side numbness). My MRI's have been stable.

Despite having horrible side-effects when first starting, they lessened dramatically as my body adjusted. When the pre-filled syringes came out, the horrible sx returned, only to abate again after a few months.

IMHO, Avonex has been the "silver lining" in my MS cloud. I'm thankful to have something to slow my progression. My early MRI's showed very active disease progression. I say: Avonex: stick with it (pun intended!)

Today, there are several treatment options. Thankfully, you have options in fighting this MonSter. Best wishes!

[BigA]

I think the two best choices are Avonex and Copaxone. I take Avonex. Now that there is an auto-injector, it's really really easy to give yourself a shot. It used to be bad, really bad. But it's so easy now.

As for side effects? Yes, avonex has the biggest side effects, but you'll get used to them in a few months (or years in my case). But what matters is whether the medicine works for you. So just go and get started. What feels like a major life decision won't in the end.

The good thing about Avonex is that you're taking the smallest dose of interferon, which is still serious powerful drug. It's as effective as the rest, so you can feel comfortable with your choice.

[pinkimartini]

I've been on Avonex for three months now. The titrate definitely helped at the start but when I went to the full dose was when things started getting interesting.

The side effects (for me) have not been a walk in the park. As I liked to put it - the rare side effects are the ones that I'm getting. I see my neuro tomorrow to go over how things are going and to run tests to make sure everything is going smoothly. I did want to talk to him about switching but after doing some research - I feel like Avonex is the better option.

[JerryD]

I hate to be the bearer of 'bad news', but an article in JAMA this June or July saysm that the interferons are not shown to be effective to slow the progression of MS. I only read a news report online but I am going to look it up on the web, now.

[Westgrl]

I've been on Avonex since May. I started out with titration. If you go with the Avonex pen, those first 4 shots will be an actual syringe. I had someone give me the first 4. I think it really helped me with the side effects. The first week, 1/4 dose, I felt really tired that night & a little funny. The 2nd week, 1/2 dose, I had some aches & pains but nothing crazy. More of an annoyance really. By the time I made it to the full dose, I had no side effects.

I felt a little silly because I had heard all of these horror stories about the side effects & had really stressed myself out worrying about them. After all that, I didn't have any. I still make sure I drink a lot of fluids the day of the shot & I still take some Advil or Aleve just to be safe.

I was fortunate to be diagnosed just after the Avonex pen came out. I was so stressed out about having to stab myself with a needle but when my doctor explained that I wouldn't even be able to see the needle it was a huge relief. I have zero stress over giving myself the injections now & it's over in just a couple minutes. So far I am really happy with Avonex.

[moolk]

I loved beong on Avonex because I had so side effects. My doc switched me to Tysabri because I was relapsing too often. I was in the hospital atleast once a month. I believe that Avonex is a wonderful drug for those that do not have very active lesions ....just not my luck
Good luck on your journey!

[Special Kay]

I've been on Avonex since summer 2006, starting right after my diagnosis. It has been a mixed bag, and I've posted elsewhere on this site about possibly switching to Copaxone.

OTOH, I have not had a single flare in that whole time, so that's pretty great. Luckily, I have no fear of needles, so that wasn't ever an issue for me, but since my neurologist judged me to be "thin," she prescribed a smaller needle (1", 25 gauge).

OTOH, I've been one of those who has had and will always have side effects. I feel lousy for one day every week, which I've gotten used to, kind of, and use NSAIDs and hydration to help combat it -- every week is different and I sometimes have a hard time scheduling my shot so it doesn't interfere with other obligations, which can be a drag.

But I also feel like it has substantially changed my motivation, energy, capacity (mental mostly I'm talking about), and general interest in life -- I guess you would call it depression. I don't at all feel like myself. For a long time I thought it was the MS but after some research, I'm starting to think it might be the interferons.

Oh, and also I'm convinced it has affected my hair's ability to grow and its thickness.

I have a friend who has taken Avonex for many years and does not have any appreciable side effects. So that could be your experience.

[Scooter24]

I was on avonex for 8 months and felt terrible for the entire time, I would get what I called the avonex hangover for 6 days and would start feeling better the day I was due for my next shot, went to copaxone and felt the same way after being on it for 6 months, after some discussions and deliberations I made the choice to go on Tysabri and have felt great ever since. There again evey individual is different and side effects seem to be different for each of us as is MS itself. I have been on Ty for about 2 yrs and have had no active lesions show up on my twice yearly MRIs and have not noticed any progression either. Ty and Ampyra have given me some of my life back. Good luck with your decision.

[wally8]

Thanks so much for all your replies, I was dx June 21 2012 and decided to take the less aggressive approach of monitoring my sx and going back for another MRI in November followed by a neuro visit, so I have untill then to research and make up my mind...Unless I have a flare before hand, in that case my neuro wants me to come in straight away.
Question is what will I do if my MRI is stable and I have no new sx ( here's hopeing)..Then I will have to decide if staying off the dmd is still an option for me, I understand the popular belief of getting on a dmd early is the right thing to do. I have also read on here that alot of people choose not to go on a dmd. So of course I am torn as to what is the right thing to do.
Thanks again for your input
Kathy

[Westgrl]

I was dx beginning of May. My follow up MRI showed no change in the lesions but my doctor suggested & I decided to go with the treatment. I don't think there is a right or wrong answer. It's a personal decision that everyone has to make.

I chose to go on the meds because I felt that being proactive was better for me as long as I wasn't suffering adverse reactions to the meds. I'd rather treat myself now rather than wait a year or 2 and have a bad flare or see a sudden increase in lesions & wish I hadn't waited.

I know that's not how everyone feels though so I don't feel that anyone is making the wrong decision. They are just making the decision that is best for them. Good luck to you!

[Special Kay]

wally8, My MRIs have been unchanged since my first one in 2006 and I haven't had any new symptoms or flares in that time, but I've been taking Avonex anyway since I have a low-risk tolerance when it comes to my health.

It's one of those things that you'll only know if it was the right decision in retrospect (or not, you may never know!), and you have to decide what is best for you in concert with your doctor/family, etc.

[BigA]

I hate to be the bearer of 'bad news', but an article in JAMA this June or July saysm that the interferons are not shown to be effective to slow the progression of MS. I only read a news report online but I am going to look it up on the web, now.

Yes, it's an interesting study. Of course, there have been other studies saying the same thing about interferons and about copaxone It's confusing. We do know that the meds do something. It's still hard to believe that they do nothing, long term.

I asked my Neuro about this. He basically said that the reason a person was put on DMDs or the reason they were suggested would have to have been based on something the doctor saw at the time; that it was not a random sample of those that took it and those that did not. What this means is that those who decided to go on the drug were worse.

I admit it does not have the strongest evidence, but it's all so unclear. However, on balance - I'd prefer to have fewer lesions and fewer exacerbations. In the end, I'll never know.

[RoyalOne]

I have been self-injecting Avonex since June 96. I had some side effects, mainly fatigue,
when I first started. They dwindled in time. For years now I have no side effects, don't even pre-medicate. Have remained stable with no attacks in all the years on it.
I use the original powdered form of Avonex. For some reason I experienced some fatigue when trying the prefilled form.
Its worked out OK for me. I don't think I could do it if I continued to experience side effects week after week. Everyone is different. You just have to try it and see.