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 :)

[Erin0313]

ess,

  Thanks Avonex user for checking in :). Great to know that not very many people here have stopped from side effects.

I will keep you posted when I finally get started. I might have the usual questions like is this normal etc. and will appreciate your experience and advice.

Take care & have a great weekend

Erin :)

[essdipity]

I'm an Avonex user checking in. There's no predicting how bad your side effects will be, but there's also no reason to expect you won't be able to manage them. It does take a bit of experimentation. I do very well with mine, all things considered.

I know of only one or two here who have stopped Avonex because of side effects. So keep an optimistic attitude, and let us know how you do.

ess

[Erin0313]

Hello miss smarty pants :) !! I have been off and on with the forum since January because I have had to many issues and with the ON reading the screen was hard.

I have had good days where I read all kinds of posts and add my 2 cents to most or at least say hello but most days I just answer messages that have been sent. It keeps me connected but not as up to date with everyone as I would like.

That is another reason that I am kind of excited to start the Avonex. One shot a week and less hiking to tons of doctors :) I hope that your prayers and mine come true and it stops it in it's tracks!

I know that I have permanent damage and issues that will never go away, like you I will deal with it but would be so happy to not be constantly flaring up!

Thanks for sharing and cheering me on. I will probably me acting like a baby about the flu symptoms so if you see it remember to kick my butt, lol.

Hugs,
Erin :)

[Erin0313]

Zulma,

Hi! Thanks for sharing your experience. It always feels good to hear from someone that has been on a DMD that you are getting ready to start. I have researched online but that is just clinical data and doesn't feel as good as reading your story.

I like the fact that over time it sounds like the effects haven't been as bad but I love hearing that you have had no new lesions since 2006!!! Wow that would be so awesome.

Thanks again for sharing. I hope that you continue to do well & I have as much success in stopping this progression as you have had.

Erin :)

[Erin0313]

Jason,

  You sound very optimistic. I like that. I hope that everything does work out for with or without the Avonex :)

You said that you have had issues with your eyes. I have had Optic Neuritis twice already this year and just visited a neuro-opthamologist yesterday. I'm glad that you like your neuro but would recommend pushing the issues with the eye problems. You could be getting optic nerve damage like me and it stinks! Treatment is IV steroids and then oral steroids so no waiting would be needed if the doc thinks you need it.

Thanks for sharing & please talk to your doc about the issues with your eyes.

Take care
Erin :)

[sllowe]

Yea, waaay too long w/no chat.

Don't be fearful of those flu-like symptoms....  I did experience symptoms, but nothing compared to the flu.  A little feverish, achey, headached, etc.  

Like Jason says, the nurses are terrific.

I'm so glad you are excited for the change.  I pray it stops it dead in it's tracks and leaves your flareless!  I can say for sure that I've been good on flares.  

I'm not MS symptom- or issueless and many of my issues have become permanent.  I still get new ones, BUT, I have not experienced a major relapse since the 1st big attack.  I don't like the continuing issues, but I'll take it over the constant flares anyday...

How long? I've been on and off it the past 2 years. I can splain that one to you if since you've not been around (hint-hint - I'm kidding of course).

Gooddays! Where the heck you been???? Nice to see you!