anonex?

I have been taking avonex for close to two months. I get sick for 3 days. I take tylenol the first day. Then I have feelings like hot flashes/menopause for two days. It is a very tiring and unpleasant. I am retired now. I couldn't take this while e woking. Does it get better. omg help!

[RoyceNewton]

You might have a problem with interferon A. I tried interferon A once and had a horrfible time of it so I switched back to Interferon B which I did for years with no problem. She who must be obeyed started on interfreron A, did it for years but had a horrible time of it no matter what she did. She has since switched to Copaxone and I do not rememb er when she last had an episode. Obviously she copes very well with it. Just a thought for you.

[Hidden in reply to RoyceNewton]

I have been on copaxone for 20 years or so. Switched to ocravious for 6 months. Had to stop because of nyc pandemic. Didn't take anything for 6-9 months. MY neurologist recommended avonex. Here I am it is not a nice experience for threes out of 7days each week. omg! I need feed back from people. Thanks for answering

[Neworleanslady in reply to Hidden]

I love Copaxone (glatirimir)

[Neworleanslady in reply to Hidden]

Why did you switch from Copaxone?

[Hidden in reply to Neworleanslady]

MY neurologist recommended that I switch to a stronger drug> I did ocravous for six months. then came covid-19> I stopped everything. Then my neurologist recommended avonex. I did it last night , so far it's my best reaction. Instead of doig it every wee, I do it for every 1o days or so. It seems to work. I am gonna do it every week slowly very slowly. Do u speak french or have french ancestry, being from NO. What drugs are you on now?

[Neworleanslady in reply to Hidden]

No my dad is from cuba and my mom’s italian. But i was born and raised in N. O.

Im on glatirimir acetate (generic Copaxone). I want NO immunosupression so i said no to Ocrevus, which my doc suggested, and i tried aubagio and did AWFULLY so I’m staying on glatirimir for now

[greaterexp]

What does your doctor say? Is this to be expected? Will it fade? Or should a different DMT be considered?

I hope you feel better very soon.

[Hidden in reply to greaterexp]

I don't know I haven' talk to her or my nurse. I guess I have to.

[greaterexp in reply to Hidden]

I hope they give you helpful answers, and I hope you'll let us know how you're doing and what your doctor had to say.

[Hidden in reply to greaterexp]

ok. This is too much do deal with. I need a break but I don't seem to get it.

[Frances_B]

It's a pity your neuro has switched you from one of the most effective meds to one of the least effective meds. Side effects from the interferons are supposed to settle down after two or three months, but this is not guaranteed - it's just what the manufacturers like to put in their patient info sheets. I did IFN-Beta1A for about 10 months and the side effects never settled down at all, and I was completely unable to take it without the paracetamol and ibuprofen - and I ended up with a medically diagnosed folate deficiency from all of the OTC meds that the manufacturer advises you to take (but fails to warn you about )

I think you need to have a serious conversation with your neuro about getting back onto something that isn't going to turn you into a non-functional pile of jelly for half of each week. There is also a lot more info now available about COVID-19 and the various MS meds. You might find some interesting info to help you on this site and maybe inform a discussion with your neuro about what options are open to you.

sites.google.com/giovannoni...

Good luck

[Peruzzot]

I was on Avonex for almost a year and the flu like symptoms for three days of the week never got better. I was switched to tecfidera and have been on that for almost 3 years now. Some people just don't react well to avonex.

[IFwczs]

I forgot - why did you switch from Ocrevus to Avonex again?

[Hidden in reply to IFwczs]

was on copaxone for 20 years. My neuro md switch me to ocravus. Then came the pandemic and I stopped for 8 months. My neurologist put me on avonex, she said it stronger against the virus covid-19. Here I am with avonex and those symptoms!

[IFwczs in reply to Hidden]

I am not a doctor and don't know if you are in the risk group. I have been on Ocrevus for several years (last infusion August 2020). If I were you, I would go back to Ocrevus. According to my neurologist, it doesn't destroy the immune system but only a small sub-set of T-cells. And the infusion centers comply with CDC guidelines.

[Hidden in reply to IFwczs]

I stopped the infusion because of covid 19. I still don't want to go still: 2 cabs back and forth in nyc and 6 hours in the hospital. How may times can I catch the virus with an ocravous infusion?

[IFwczs in reply to Hidden]

I don't know about your cabs, there have been no more cabs here since the pandemic, only Uber, but they always wear a mask. But our hospitals (I am sure yours too) comply with CDC guidelines. So unless you are you in the risk group (age, diabetes etc.), you shouldn't be in jeopardy.

[StacyHayward]

I drank lots of water before each shot, plus took Tylenol and ibuprofen before each shot and the morning after and had almost no side effects.

[DM0329]

Hang In There!

Boy can I relate to having horrible side effects, too. After the first six months after starting Avonex, it slowly got better. But, even after 23+ years, sometimes harsher side effects show up but it's mostly "mild flu-like" side effects now.

FWIW, I was dx with MS when I was 25 way back in 1994 (only Betaseron was dispensed via lottery way back then in the USA). Three years later, a follow-up MRI (1997), showed substantial "silent progression" as I had many new lesions. My neuro said I was "lucky" three times, and to start Avonex ASAP!

Fear is a great motivator, and I have faithfully been on Avonex for 23+ years. I've had a few mild relapses that coincided with both my parent's deaths (from natural causes a few years apart from each other). Sometimes, I think the stress from their deaths contributed to my MS flares (Optic neuritis then left-sided numbness). But, who knows?

Twenty six (26+) years after my MS dx, and 23+ years after starting Avonex tx, I've stuck with it (pun intended). Despite being a huge needle weenie, I've managed to give myself IM injections. Avonex has been my long-time companion.

By talking with your doctors and evaluating Avonex over time, you can do the "cost-benefit" analysis to see if Avonex is the right option for you. Thankfully, today, we have options.

Remember, you are Mighty Strong!

[agate]

I took Avonex for 3 years. The flu-like side effects were bothersome for the first year but I could do things I usually do during the day with the help of Tylenol. I was glad when I could stop taking the Tylenol though. The first Avonex shot was the worst but the whole problem did get better over time. I should mention that I stopped taking it though after I passed out one night a few hours after the shot. I don't know if there was a connection but to be on the safe side, I told the neuro I wanted to stop taking it, and he didn't argue.

[Horse714]

I’ve been on Avonex for over 20 years take 800 mg of ibuprofen instead of Tylenol.

[Curran1970]

Have been on Avonex for over 2 years, flu like symptoms unless I take ibruphen 600,2xparacetemol every 6 hours on day of injection for 24 hours. Take the above before I get the jab about half an hour later, it eases the pain of the needle. My wife administers it as she is a nurse. Had the pens but found the syringes easier. Hope your MS is under some control, mine is good at moment. Avonex is proven to be fairly safe & in use with over 30 years I think. All have side effects to some degree. I have mine on Friday when I finish work so that the effects are over by Monday. I am a postal worker with a van delivery. Can be tough on some days, but grateful to be able at the moment. All the best Eugene Curran.

[Cwacker]

Hi, (i like your name😊) I took avonex, and had the flu symptoms for 5 days of the week. I hydrated and took 800 mgs of ibuprofen that put me to sleep which made working difficult. My neuro wanted me to stay with it but I quit it after 2 years. I had I hope you're able to adjust to it or that your neuro can help you with the side-effects. I wish you the best

[Curran1970]

Just like to say hello to the MS Community, its been a while since I tuned in. Hope you are doing OK. Tough at times but we put best foot forward & battle on. One other side effect I notice with Avonex is after the injection it is very hard to get to sleep.

[Lucy54Abby04]

I had the same symptom response from Avonex. I didn't get alot of positive outcomes. My neurologist had me try several other treatments until we had much success with Tysabri. Unfortunately I built up antibodies against it and was only able to take it for 18 months. But what an awesome 18 months it was. I wish you all the best in your journey.

[Hidden]

I have been taking avonex for four months or so. AT first it was horrible; now, it's better but it is still a pain in the ass. I am shooting tonight, wish me luck!