Any Advice Or Experience On Avonex?

[Erin0313]

The Cleveland Clinic Doctor Wants to start me on Avonex in the next couple of weeks and follow me here in Cleveland from now on. She feels that all of my problems are either MS or various meds that the doctors have given me in the past. No Sjogren's etc. ? Wow

I was on Copaxone and it didn't work but am willing to try anything if it will stop this progression. 3 neuro's in the last 5 months with 3 different opinions. Rituxan, IVIG & now Avonex. I know that I have seen lots of you on it so please share your thoughts when you get a minute please.

Going to the neuro-opthamologist in the morning and then back home for Thursdays MRI's.

Thanks for sharing your thoughts. Talk to you soon

Hugs,
Erin :)

[gooddays]

Hi, we have not met, but I have been part of this forum since 12/07.  I do not post much, but read it every day.

I have been using Avonex since 2005 and at the beginning the side effects would kill me. Sometimes it was the fever, others were the chills or the body pain associated with the flu, but they only lasted 24 hours.  Now, after so many years, I may get a fever once in a while, but I have not have new lesions since 2006, which is to be expected from the DMDs!!!!!!!

Start with your support group and make the Biogen people part of that support group.  You can also include me, if you like.

Good luck with your medication,

Zulma (gooddays)

[Jason732]

I’m not on anything for MS as of now. My symptoms have been minor to mild except for some pain in my ribs and back caused by a lesion in my thoracic spine. I’ve also had what I can only assume are optic nerve issues (pain behind my eye, visual artifacts, blurred vision etc.) that are getting worse little by little.

One thing I can tell you about Avonex and my experience so far is that the Biogen/MS Active Source people are absolutely wonderful to work with. They’ve been an incredible resource and have helped me in so many ways to be able to eventually start and continue with Avonex to treat my MS. My insurance doesn’t cover Avonex very well because they consider injectable medications to be a medical benefit instead of a pharmacy benefit, which makes it an 80/20 split after my deductible is met. Every pharmacy I’ve spoken with so far has quoted me about $1000 per month for the prescription and that would leave me with $200 to pay every month, which I cannot afford. The folks over at MS Active Source have different programs for financial assistance and are very helpful at finding it for people that need it, so don’t let the cost dissuade you from considering it as a viable treatment.

I have a great neurologist and I’m sure he’s got some ideas on what to do next, even if I can’t start Avonex because of my liver enzymes being high. I have faith that everything will work out and it may not happen on the time table that I expect it to, but one way or another things will work out.

All the best,
Jason

[Erin0313]

  Hi there! Long time no talk , huh. My MS has been one non stop flair since January. Two episodes of ON, balance issues, speech & cognition. This has been a long year!

I am kind of excited about starting a new DMD and a little nervous. The doctor said possible flu symptoms for 24 hours after each injection. That's one bad day every week if it's true, yuck. I guess if it stops this progression it will be worth it but I would love to hear from someone that has taken it.

What kind of side effects do you get with Rebif? How long have you been on it? I already can't remember which other one was offered but I asked the neuro which one she would take if she were me and she said Avonex.

Thanks for the well wishes & support

Hugs,
Erin :)

[Erin0313]

  Hi! Thanks for sharing and joining in on the thread.

  You mentioned that you are not any any interferon yet. Does that mean that you are not on anything for your MS yet? How have your symptoms been since the dx?

I know that liver functions have to be checked but I can't imagine that your doctors aren't going to get you on something.

Good luck & I hope that you get helpful info on the Avonex here as well.

Erin :)

[sllowe]

Hi Erin,

I'm on one of the interferons, Rebif.  YOu probably already know, but the interferons can be equally effective as the Copax, which is a peptide.  

They all are proven to work, just by different mechanism. So, maybe your body will respond well to the Avonex -- all you can do is try.

I sure hope it works.  I haven't seen you in a bit, so I'm glad you posted.  Besides the increase in lesions, are your symtoms increasing along with them?

Sorry if you've mentioned and I've missed you..

[Jason732]

I'm interested to see what people have to say on this topic. I was diagnosed in February of this year and was given a prescription for Avonex that day. I had to have a blood test to check my liver function and my AST and ALT levels were way high, and to make a long story short, they still haven't come back down to "normal" and I'm still not on Avonex.

Apparently, liver function tests have to be done every 3 months for the first year on Avonex (or any interferon, for that matter), and they recommend 6 to 12 month intervals after that.