Stopped Avonex

[Michele48]

Lucky me, I became a wiz at giving myself my Avonex ijections. never had the horrible side effects other than fatigue. One thing my husband noticed is that I was becoming more aggressive, meaner, more depressed impatient and edgy. To the point that I just didn't care if I lived or died. Problem is what are the side effects of going off
avonex. I felt great for a couple days, now I have an upset stomache, edgy, headache, just don't feel good. I see the Neuologist nex week to determine my new options. I just want to be semi-normal again.

[BigA]

Don't take this the wrong way, but it's really difficult to know what's causing what when you're just starting out.

When I was first diagnosed, i started Avonex, Paxil and Baclofen. I was so foggy at first, stiff, depressed, scared, my eyes were dry and I tingled everwhere.

I asked if the stiffness could be caused by the Avonex and my Dr said no. Same for the drey eyes. One day I had a guess that it was the paxil that was making me foggy. I stopped it (note: Do this with your doctor, stopping any medication suddenly is can be dangerous) and noticed I was clear.

But I also know that my emotional state effects my physical state and vice versa. If I am nervous, I hurt and tingle more. Your symptoms may or may not be caused by the Avonex. Discuss with your doctor and don't forget about the psychological side. there are physical reasons why we get depressed or anxious and there are emotional reasons why we get depressed or anxious. And depression or anxiety can appear in ways we don't recognize.

My point is to keep all this in mind. Drugs can cause side effects, but so can our mental state and it's really hard to tell the difference. There is also a kind of symptom lottery that goes on all the time in our bodies. So talk with your doctor and take it carefully. Some people jump in and out of DMDs, decide they don't work before taking them long enough and then jump to another.

I kept up with my shots and after 2 years, I know what's the Avonex and what's not. So talk with your doctor and make a thoughtfull plan that you can stick with.

[Michele48]

Thanks Big Al for your reply, I thought Avonex was a great drug that fit well with my life style. I had no flu like symptoms, just fatigue. I would like to stay on the Avonex, but I am worried about the major psychological side effects. I was so angry, edgy, aggressive, just plain mean! Heart papitations..ect. I literally thought I was going to have a heart attack. I couldn't catch my breath. Hopefully, there is medication they can give me to counter these effects, mellow me out a little. I was so positive about dealing with MS, now I am scared.

[Redwings]

Hopefully, there is medication they can give me to counter these effects, mellow me out a little.

Hi Michele:
Bear in mind that any medication you add is likely to have side effects of its own (e.g., antidepressants all have side effects). Then you may be dealing with side effects from two medications. If it comes to that, you and your doctor will have to consider whether it's worth staying on the same med(s) or changing to a different one, with all factors considered.

You can still be positive about dealing with MS. Avonex is only one med, and this is only a temporary setback.

[BigA]

You were lucky to not have the flu-like effects. It took me a while to get used to the shots.

You sound like you're clear about what's what, so if the Avonex really does affect you that way, then it may be wise to stop. Not caring if you live or die is a not really a tolerable side effect.

Some people get very used to their copaxone shots and make them part of their daily routine, so if you needed to switch, at least there are options.

[dpmich]

How long have you been diagnosed? I ask because I had alot of the anger things from being dx. It is so hard to know what's caused by what, I feel for you.

[knuckle]

I shot Avonex for over five years and in years 4-5 I became depressed and irritable to the point that I switched to Rebif (and then on to Copaxone, Novantrone, Tysabri, and now LDN - I've had MS for about 25 years).

Looing back, selecting Avonex for it's convenience factor was a mistake for me because the dose of Interferon was too much to handle. Rebif and Betaseron may be a better way to minimize side effects.

Looking back, what I really should have done is combine Copaxone and LDN. I would inject Copaxone daily for six months and then only every-other-day. I would take LDN every night with the following:

Malic Acid (600mg w/magnesium before each meal)
Alpha Lipoic Acid (2-300mg timed release before each meal)
Calcium 2-AEP (500mg 2X daily)
Calcium Orotate
Vitamin D (5,000iu)
Soy Lecithin or better yet - Choline Citrate or Alpha GPC. They all help defend your myelin sheath.
Curcumin - Google: curcumin multiple sclerosis

Five years or so from now I doubt too many people will be taking Avonex and these Interferons. Long term there is little data that they help much, can be toxic, and make you feel crappy.

[RoyalOne]

I shot Avonex for over five years and in years 4-5 I became depressed and irritable to the point that I switched to Rebif (and then on to Copaxone, Novantrone, Tysabri, and now LDN - I've had MS for about 25 years).

Looing back, selecting Avonex for it's convenience factor was a mistake for me because the dose of Interferon was too much to handle. Rebif and Betaseron may be a better way to minimize side effects.

Five years or so from now I doubt too many people will be taking Avonex and these Interferons. Long term there is little data that they help much, can be toxic, and make you feel crappy.

I certainly expect to be on Avonex five years from now at least. I have remained stable with no attacks and minimal side effects in the sixteen years I have been on it. While it may not work for some, for me it does.

[BigA]

I certainly expect to be on Avonex five years from now at least. I have remained stable with no attacks and minimal side effects in the sixteen years I have been on it. While it may not work for some, for me it does.

Thanks for that. It's always good to hear positive outcomes while I suffer through the side effects today. I hope to do as well as you and I remind everyone to have their vitamin D levels checked whatever medication they are or are not on.

[Michele48]

Thank you for all your information and encouragement. It is truly appreciated. I was diagnosed in Dec 2011 and started treatment Feb 2012. Only did 12 shots of Avonex. I meet with my Neurologist on Tues. I have a list of things to discuss. I haven't taken any MS med for 3 weeks and I don't want this disease to progress. I am fortunate to have few problems. I, for the most part, have accepted the fact that I have MS. Somedays are better than others. The anxiety, fatigue, are the hardest to deal with, I do take meds for anxiety (Ativan), but it doesn't last long. I can't take before work. Makes me sleepy. I know there are longer lasting anti-anxiety meds..hopefully, we can change up my meds. I just want to feel semi normal again, be a great wife and Mother. Right now..in my opinion..I am not either. Again, thank you for your encouragement and support. it is truly appreciated and needed

[knuckle]

Good for you RoyalOne. Some questions...

Are you male or female?

Age of disease diagnosis and now?

Symptoms at disease diagnosis and now?

Reason I ask is I think there is a difference between the sexes and age on how MS progresses.

The drug clinical trials don't account for this variable.

[BigA]

I, for the most part, have accepted the fact that I have MS. Somedays are better than others. The anxiety, fatigue, are the hardest to deal with, I do take meds for anxiety (Ativan), but it doesn't last long. I can't take before work. Makes me sleepy. I know there are longer lasting anti-anxiety meds..hopefully, we can change up my meds. I just want to feel semi normal again, be a great wife and Mother. Right now..in my opinion..I am not either. Again, thank you for your encouragement and support. it is truly appreciated and needed

You're on the right path. It just takes time. So no problem that you're not as good a mom or wife right now - you have to adjust to this.

But anxiety can make a bad toenail seem worse than cancer, so that needs to be a priority. Talk to your Dr. about an antidepressant that will help you with your anxiety.

[LadyDrifter]

Michele48-
I am going through the same thing. To the point that I skipped my shot last week just to see if it made a difference. I have been so moody, grouchy, just plain ole hard to live with, and it is affecting my family. I am so confused right now, but something has to give. I can't get in to see my neuro until next month sometime, so I am going to talk to my PCP this Wednesday to try to get some answers. Maybe another med is the answer for us? At this point, I just don't know. Please let me know what you find out. Thanks!

[Michele48]

Hi Ladydrifter,
I will definetly let you know what my Neurologist says. I felt like I was loosing my mind!! I was just mean, easily set off. Like I stated before, my husband noticed with each shot I was getting worse.

[Michele48]

Saw Neurologist today. She is referring me to a Psychiatrist. Because Rebif is a higher dose of Avonex spread out over 3 SQ injections, I could have the same reaction as the Avonex. She said she didn't want to guess on what medication or how much medication I could use to keep my mood in check. I told her I didn't want to do Copaxone because I can see my self being non-compliant with a daily shot, I don't want to use the MS pill (forgot the name). So I left today with no medication until I see the Psychiatrist. Makes me nervous. That will be one month without any medication. Maybe I should man up and take the Copaxone.