Avonex-considering quitting..

[Lissa]

Hello all. Quick intro-ON 5 yrs ago, right leg went out 1yr sgo. Started Avonex 5 months ago, still having horrible side effects. I just had a MRI which showed NO changes since my last one 14 months ago.
Since starting the Avonex I feel that my fatigue and disabilty levels have increased, I have had to lower my work hours and just have not been myself. I do plan on talking to my neuro about this, but right now I am feeling that the medication risks are outweighing the benefits.
Just looking if anyone else has made this kind of decision after being on the interferons.
Thank you!

[agate]

Hi Lissa and WELCOME!

I was on Avonex for 3 years. It took at least a year for me to get enough control of the side-effects so that the day after the shot I didn't drag around with aches and pains. Then I was going along well enough but then one night, several hours after the shot, I passed out and fell.

The neuro said that interferons were out for me after that, and I switched to Copaxone a couple of years later.

I'm not typical though. Many people adjust to Avonex and do well on it. I'm older than most people who go on the ABCR drugs, and I've had MS longer, and it's SPMS.

You could always stop the Avonex and return to it later if you wanted.

[MS Bites]

do you take anything before your injection?

i took 1/4 of a prednisone b4 injection.... it helped..... or 2 tylenol one hour b4 injection

i am on C now


welcome

[gdmcor]

agate, I thought the CRAB's were only for people with RRMS, at least that's what my neurologist told me. I'm curious because I don't think I'm really RRMS anymore, but my neuro thinks I am. I think he's saying this just so I'll go on one of these drugs - Copaxone is his choice for me.

My question is: Did your neuro tell you that you can still benefit from using a CRAB even if you're SPMS? G Marie

[Cat Dancer]

agate, I thought the CRAB's were only for people with RRMS, at least that's what my neurologist told me. I'm curious because I don't think I'm really RRMS anymore, but my neuro thinks I am. I think he's saying this just so I'll go on one of these drugs - Copaxone is his choice for me.

My question is: Did your neuro tell you that you can still benefit from using a CRAB even if you're SPMS? G Marie

I'm not agate but...

I've been spms for years. I've been on Betaseron for 15 years -- all the while labeled "spms". Now both Avonex and Betaseron are being prescribed for people with spms...and I think (but am not sure) that Copaxone is too. I think they're finding that these drugs work for everyone..so if your doctor is enco9uraging you to go on it, why are you balking?

[lady_express_44]

I think I would establish a reasonable deadline, ie. 6, 9 or 12 months, then make a decision at that point.

Have you considered Copaxone instead?

Cherie

[agate]

gdmcor, the labels on the ABCR drugs (or at least on A and C) specifically state that they're for RRMS, but if you ask their phone support-line people, you're told that all that means is that they haven't been thoroughly tested on progressive types of MS, and so they can't make any claims. I'm fairly sure that Betaseron has been officially approved for SPMS, however.

Some neuros, including mine, firmly believe that anyone with any type of MS stands to benefit from taking one of these injectable ABCR drugs.

When you think about it, what have you got to lose? It's at least worth a try, isn't it? I mean, unless it will put a real strain on you financially or there are other health considerations.

[BBS1951]

I've been off Avonex since 2004. I do the Swank Diet, I swim every day, I rest every day. I am doing better than I did pre-Avonex and during Avonex.

Interferon isnt tolerated by everyone. Did you try the mix it yourself? The side effects are more intense for some on the prefilleds.

[gdmcor]

Thanks for responding Cat and agate. My neurologist recommended the Copaxone because of fewer side effects and he knows how I am about taking medicine and the side effects are worse than the disease! That's why I wouldn't want to take AB or R - couldn't take those flu side effects.

My only concern about taking C is the reaction some people get of the chest pain and the heart speeding up. I already have heart concerns and take Atenolol for atrial fib. That would be rather frightening, even though I know it usually doesn't last for long. Can this drug do damage to your heart? I guess I should ask the doctor, but thought someone might know.
G Marie :)

[agate]

Some people aren't troubled by flu-like side effects on A, B, or R. Others find that they're controllable and even disappear after a few months.

I haven't had the "immediate post-injection reaction" (IPIR) from Copaxone yet, I'm glad to say. It's supposedly rare. The literature you get about Copaxone (and you get a lot of it) if you decide to go on it tells you how to cope with that reaction if you have it. It's mostly a matter of staying calm until it goes away, which takes less than half an hour, they say.

As for whether Copaxone can damage your heart or whether the medicine you're taking for atrial fibrillation would interact with Copaxone, I've read through the pharmaceutical leaflet about Copaxone, and what I'm coming up with is that they don't know:


Immediate Post-Injection Reaction

Approximately 10% of MS patients exposed to glatiramer acetate...experienced a constellation of symptoms immediately after injection that included flushing, chest pain, palpitations, anxiety, dyspnea, constriction of the throat, and urticaria. In clinical trials, the symptoms were generally transient and self-limited and did not require specific treatment. In general, these symptoms have their onset several months after the initiation of treatment, although they may occur earlier, and a given patient may experience one or several episodes of these symptoms. Whether or not any of these symptoms actually represent a specific syndrome is uncertain. During the post- marketing period, there have been reports of patients with similar symptoms who received emergency medical care.

Whether an immunologic or non-immunologic mechanism mediates these episodes, or whether several similar episodes seen in a given patient have identical mechanisms, is unknown
.


Drug Interactions

Interactions between Copaxone injection and other drugs have not been fully evaluated. Results from existing clinical trials do not suggest any significant interactions of Copaxone Injection with therapies commonly used in MS patients, including the concurrent use of corticosteroids for up to 28 days...


I suggest making very sure that your doctor is fully aware that you're taking the Atenolol for atrial fibrillation.

[gdmcor]

Agate, Thanks for the additional information on Copaxone and your advice on making sure my doctor knows about my heart condition and the Atenolol.

I wouldn't mind taking one of the interferons if they'd agree with me. Of course I wouldn't know that unless I tried one of them! I guess I have some research and decisions to make.

Good luck with your decision Lissa! G Marie:)