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Posted: Thu Nov 16, 2006 4:22 pm Post subject: My experience with Avonex
I was one of the first patients to try Avonex after a single episode. I took part in the CHAMPS trial roughly nine years ago and I was on Avonex until July of this year.
There were definite benefits to taking the shot once a week. I mastered doing it right in my thigh, alternating thighs from one week to the other. I hated the side effects. I still remember feeling like crap for two days following my shot even in year 8 & 9. Take your Advil or Tylenols an hour before your shot and keep taking them the day after.
So, did Avonex help me? Tough question to answer since I did progress and nine years later, I am finding it difficult to walk more than a few blocs. My progression is very slow since I did not suffer from any attacks after I got optic neuritis a year after my first episode.
The natural course of MS would have brought me to the same point or maybe slightly worse. In this regard, Avonex probably did not do much for me.
Ever since I stopped taking it, I feel better in the sense that I do not have any nasty side-effects to put up with. I am going to try taking antibiotics for now and see how it goes. If my MS progresses, I will try mitoxantrone.
All along, I incorporated the Best Bet Diet. It is important to eat right, drink lots of water, exercise in moderation, sleep well and relax as much as you can. No drug is better than that.
Joined: May 28, 2006 Posts: 27 Location: Miami, Fl
Posted: Thu Nov 16, 2006 8:31 pm Post subject: WOW
I was just Dx this April and I got started on Avonex right away. Reading this is REALLY scary. Please someone .. shed some light! !here! _________________ Mars
Joined: Sep 12, 2006 Posts: 874 Location: Dayton, Ohio USA
Posted: Thu Nov 16, 2006 9:04 pm Post subject:
I had to get off of Avonex. I was on it for just over three years and it definitely affected me, and not in a good way. I now have lesions two years later that I didn't have when I started the Avonex. I am convinced, however, that we just found my disease early and any treatment would have put me at the same point.
Anyway, it never gave me suicidal thoughts, but I had "darker" thoughts than I had ever had and generally had a dreary outlook, intensely dreary I might add, that I am just not used to. I started feeling that way and pawned it off on just having MS. After I got off of the Avonex, I felt MUCH better and am now enrolled in a Tovaxin trial that I wouldn't have been able to get into had I been on ANY of the CRABS (I really have my fingers crossed).
That being said, I have no idea if they really work or not, I just couldn't deal with the way it made me feel. You definitely don't look forward to "shot night" if you have the side effects (flu-like syptoms, which really means uncontrollable shivering, and a severe headache). The only thing that worked for me was to take 800 mg of Ibulprofen and a bed. It was manageble physically, but mentally it didn't agree with me. I would abolutely NEVER discourage anyone from making their own choice, I just know it didn't agree with my particular chemistry.
Joined: May 28, 2006 Posts: 27 Location: Miami, Fl
Posted: Thu Nov 16, 2006 9:12 pm Post subject:
I get a lot of muscle ache. My Neuro gave me alist to choose from to see which my insurance covered. THey coverd all of them. He then chose Avonex. I am really scared I might be injecting something that does nothing. I have heard so much about Copaxone and Tysabri. _________________ Mars
I get a lot of muscle ache. My Neuro gave me alist to choose from to see which my insurance covered. THey coverd all of them. He then chose Avonex. I am really scared I might be injecting something that does nothing. I have heard so much about Copaxone and Tysabri.
Just a point. there isn't much more confidence when you are on copaxone since we always wonder if we should have went with Beteseron. _________________ John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX:r. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
Joined: May 04, 2006 Posts: 295 Location: Calgary, AB, Canada
Posted: Fri Nov 17, 2006 11:18 am Post subject:
Hi Mars
I already sent you a pm but I just wanted to post here too in case someone is looking for info on Avonex. Being a nurse, I really believe in drugs. I see them work all the time. It's true that I will never know for sure if Avonex really ever did anything for me but...I think that it is working. Before I started my injections, I had three attacks. Pretty mcuh one a month. Things seem to have calmed down now. I have the aches and chills but I guess not as bad as other ppl. I take 200 mg of advil and all is well. I don't take it before my shot. I take it when I feel the chills coming. I find that works well for me. I did have a lot more aches and chills at the start but now I am getting used to the med I guess. So, that's my experience with Avonex. If I start to have more attacks, then I guess it's time to switch to something else. I don't really want to worry about what ifs because I feel that I have made the best decision for me at this time. I think all the meds are pretty much the same. If you are not having any attacks right now, then just keep doning what you are doing. it may be the disease itself or the meds you are on. Whatever makes you for comfortable.
Just a quick point- just because one person didnt derive benefit, doesnt mean that the next person will not. MS is so different for everyone and many people see significant benefit in reduction of relapeses and disability progression. Im still amazed though, at the number of people still going on Avonex when there is clear data from multiple trials showing that Rebif and Betaseron are superior. Even the American Academy of Neurology agrees. Finally, the flu symptoms are less, notably with Rebif because you are dosing the drug more often, you're body becomes used to the drug quicker. I work with MS patients and people on Avonex who switch to Rebif feel so much better. I just wanted to share my knowledge, not only from the Neurology literature, but also anecdotal info from patients.
I'm still amazed though, at the number of people still going on Avonex when there is clear data from multiple trials showing that Rebif and Betaseron are superior. Finally, the flu symptoms are less, notably with Rebif. I work with MS patients and people on Avonex who switch to Rebif feel so much better.
But a large percentage of those on Rebif develop NABs at which point it stops working, as opposed to a small percentage of Avonex patients developing the NABs. After 7 years on Avonex, I'd gladly switch to get rid of the achy symptoms every week, even though 3 shots a week does not sound fun. I'll have to ask my neuro about it next visit.
I'd try Tysabri again, but I'm afraid the one dose I had sensitized my body and I would experience the anaphalactic shock that seems to be common for those who resume taking Tysabri.
Posted: Tue Nov 21, 2006 7:43 pm Post subject: Re: My experience with Avonex
beyondms wrote:
The natural course of MS would have brought me to the same point or maybe slightly worse. In this regard, Avonex probably did not do much for me.
Is this a neuro's opinion here? I am an Avonex user and have seen slow progression as well. But my opinion is that Avonex has helped this from being much worse. I very much appreciate beyondms' post here because it challenges my own thinking/assumptions. From research it seems that progression can be significantly worse and faster than what beyondms has already had to deal with. Maybe the operative word here is "can".
I would love to hear other data on progression experience. I have been optimistic (maybe "drinking the koolaid") about Avonex, particularly because of the data on slowing of cognitive decline.
Joined: May 28, 2006 Posts: 27 Location: Miami, Fl
Posted: Thu Nov 30, 2006 10:39 pm Post subject:
I have been on Avonex now for 5 months. The side effects are slight. It makes me SOOO worried when I hear females in my Neuro's office that Avonex did nothing for them. _________________ Mars
Joined: Nov 10, 2004 Posts: 88 Location: USA - Connecticut
Posted: Fri Dec 01, 2006 10:10 am Post subject:
I was diagnosed with MS after a bout with ON and went on Avonex almost immediately (within 2 months after ON). I have been on Avonex over 3 years now and (knock wood) I have not had any relapses. I self inject and take my shots usually on Sunday afternoon. I am very happy to say that other than some mild joint aches the following day, I have no side-effects. In the beginning I did - fever, aches, etc. Overall I am very happy with Avonex.
Joined: May 04, 2006 Posts: 295 Location: Calgary, AB, Canada
Posted: Sun Dec 10, 2006 3:39 pm Post subject:
Hi all,
In talking to another MSer who uses Avonex, we felt that we were very dose dependent. I feel more MSy they closer I get to the next shot. After my shot I feel better. I was just wondering if there are others who feel the same way??? I was thinking that maybe I need something at a higher dose? any thoughts on that? Also, since they don't know a whole lot about how interferons work...does anyone else believe that they are less susceptible to viral infections????
NN
Posted: Mon Dec 11, 2006 12:55 am Post subject: Re: My experience with Avonex
Sh8un wrote:
Also, since they don't know a whole lot about how interferons work...does anyone else believe that they are less susceptible to viral infections????
All I can say about viral infections is that I don't get sick much, other than having MS of course. When I do get something, like right now I've had a sore throat for a couple of days, I just let it run it's course without taking stuff to bump up my immune system. That's assuming that it's viral. For infections, I'll take antibiotics if I need them but I haven't for a long time.
On another note, having been on Avonex for six years I've noticed that the severity of my allergy to pollen has become greatly diminished. The year or two before I was diagnosed, it got so bad that all I could do was just sit and wipe my nose as it drained. Blowing it didn't even help. Now I only have a problem when I go out and mow the lawn. However, I've started wearing a dust mask which takes care of that problem. Overall, I would say that I noticed a change in my allergies after about the first year on Avonex.
Joined: Sep 12, 2006 Posts: 874 Location: Dayton, Ohio USA
Posted: Mon Dec 11, 2006 7:40 am Post subject:
I must say, I don't think I got sick at all and had less cold sores when i was on Avonex. I get sinus infections and things like that a lot since I've been off of it.
Joined: May 04, 2006 Posts: 295 Location: Calgary, AB, Canada
Posted: Mon Dec 11, 2006 12:49 pm Post subject:
Thanx for your comments. I just noticed that because I was home with my fiance and my sister who both were sick with viral colds. I never caught it. At work, there were also a few ppl that were sick and I never caugh those colds either. I mean, I never really ever caught colds that easily but I should have caught it from my fiance anyways.
NN
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r. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
