1 year on Avonex

[Needtoknow613]

So its been a year now.  I only missed 1 injection the whole year.  My recovery days are up and down.  I have figured out that if I take my injection out of the frig at least 6 hours before I inject, then the next day goes much much better.  But, I am starting to wonder if the Avonex is working for me because I am having more symptoms.  

I am also looking for a new neurologist.  The last visit with my neurologist left me feeling baffled.  He just didn't know why I am feeling vibrations in my body especially when I am lying down.  He has not taught me anything about this disease or my condition.  How do you determine if ms is progressing or not if your doctor just does a neuro exam and your physical exam is good.  

It has taken the better part of this year for me to come to terms with having this disease.  Now I need to learn more about it.  If some one has any suggestions, please let me know.

Thanks,

Michelle

[Ojibajo]

I wish that I had your discipline. I "forget" to inject about every other week!

[sllowe]

Sorry, should real... Ultimately, we want the DMDs to give us all the potentials (revealed during studies), one being the ability to stop the break in the blood brain barrier...

[sllowe]

Needto,

Yes - you should be concerned with increasing brain lesions. Some have more disability due to the increase, some do not. Some have continued disability w/out an increase in lesion load.
Ultimately, we want the DMDs all the potentials of the DMS, one being the potential to stop those attacks or breaks in the blood brain barrier and prevent more damage.

In terms of therapy - many things are factored by the doctor and patient. For example, if my scans revealed increased lesions, despite my score on the disability scale, my doctor would recommend a change in therapy.

And, on the other hand, if I presented w/increase in disability, or limitations, my doctor would suggest a change in therapy.

Hope this helps.
-Shell

[Needtoknow613]

So you are saying that it doesn't matter if I have more lesions as long as my disability has not progressed? But, if I have more brain lesions, then the disease is eating away at my brain right?

[COBOB]

I'm not sure I would measure disease progression based on MRI lesion counts.  We state that doctors should not count lesions, and I feel we should follow our own advise.  The literature pretty much states that you may see in increase in lesions, but the long term benefit to DMD therapy is to prevent the increase in the EDSS over the long term and increase the period of time between exacerbations..  

http://www.avonex.com/pdfs/pi-syringe.pdf

The question should not be "Do I have more lesions?"   I'd think the questions would be "Has my disability gotten worse?  Has the period of time increased between my exacerbations?"

Bob

Bob

[Avonexveteran]

Hi Michelle.

Its difficult sometime to tell if Avonex is working.  Perhaps you could request a followup MRI.  That should tell the neurologist if Avonex has been beneficial.

[Needtoknow613]

Hi Laura

I don't know how the neuro exam is always fine, but yet I have vibrations whenever I sit still or lay down in the bed at night.  Go figure.

Michelle

[Needhelp16]

I feel your pain.  My neuro exam is always fine but I still feel like crap.  I also don't like the lack of info my neuro gives me so I'm also in search of a new neuro.  I wish you luck in finding the answers you're looking for!

Laura

[Needtoknow613]

I have not journaled my experience yet.  I have made notes on the calendar, but it might be helpful to journal it.

Thanks,

Michelle

[Needtoknow613]

Thanks so much for the information.  I will definately check it out.  Just recently, I attended an informational meeting from Biogen.  I realized then that my neuro was not giving me the information about my condition that I needed.  I have now switched doctors, but my first appointment is not until December 1st.  Thanks so much for your support.

Michelle

[sllowe]

Needto -

Long time, no see! Congrats on your year-long compliance :) You should be proud of that!

You can def. be symptomatic and not be in relapse. Sorry your doc has not shed any light on you yet after a year.

Have you journaled your year of symptoms at all? To see if there is any trends?
Nice to see you,
-Shell

[Lulu54]

Hi Michelle,
There are lots of great sources for information.  Check out the websites for NMSS, MSF and MSAA for very useful information.  They all have books/brochures that you can request.

We have great health pages here, too. They are very easy to understand and we have them on just about every topic.

Subscribe to NEUROLOGY NOW,  MS PERSPECTIVES and any of the other free MS magazines. They have great information in them.

All of the drug mfgs. have their own websites - Avonex is madeby biogen and they have some really good resources on their website so be sure to check that out.

Determining progression is difficult - even us as patients have trouble figuring those answers.  Do you feel different?  Are you able to do less ?  Are there new symptoms or just return of older ones?  You should be able to talk to your neurologist or the nurse inthe office about these questions if you see an MS Specialist.

Be sure to ask your specific questions here as well - someone is always willing to reach out and try to help.

be well, Lulu