More symptoms even on Avonex

[LATW]

I have been on Avonex for 17 weeks now but I am still experencing new symptoms. Especially in the past month.

My doctor had me cut my Avonex back to 1/2 about a month ago because of the side effects.

I THOUGHT I had been taking half dose but found out from the pharmacist that I have actually been taking 3/4 dose.

That was my fault for not understand where the half way mark is at.

But at least my side effects are becoming less even on the 3/4 dose.

Anyway, I am concerned about these newest symptoms even though I am on Avonex.  The ON I started in January is getting better.  

How does a doctor decide if you have RRMS or one of the others?  In the past I have had clear onset and then recovery, this time I am wondering what is going on.  

Thanks,
LA

[Quixotic1]

First, stop worrying.  Avonex doesn't begin to show its full effect until 6 to 8 months, according to my MS neuro who is also an Avonex researcher.  So your new symptoms do NOT mean it is failing.

Yes, I have almost no side effects from the Avonex now, 1 year into treatment.  They were never really bad, but in the beginning I had headache, stiff and sore muscles that lasted about 18 hours.  Starting about 4 months they started to lessen in severity and a few months later began to lessen in duration.

Now, your homework for the next week is to read the health page on "Categories of MS."

But, in a nutshell, they determine your category from your pattern of symptoms.  I thought that was an absolute.  But, there is some leeway.  In my first two years, I had onset of symptoms (weakness and spasticity) that arrived and progressively got worse.  I had one clear episode of arm weakness that came on suddenly and slowly resolved.  Even that has returned and subjectively (to me) is getting progressively worse over the last 7 months.  However, my exam has not changed in the last 7 months.  So, from where I stand, it seems like I have Progressive Relapsing MS (which is rare).

BUT!  My neuro says no.  I don't have enough brain/spine lesions to be "Progressive."  That is, he has never seen a person with progressive disease with as little MRI involvment as I have.  So, he is calling me and treating me as RRMS.  I trust his evaluation in this, but it feels different to me.

The rule of thumb is that the category is determined by the symptom pattern, at least initially.

Quix

[essdipity]

Hi there. From what I remember, your initial side effects were really fierce, so maybe the ones now are slacking off considerably, at least I hope so. Do you pre-medicate and time your injections for right before bedtime?

I will be starting Avonex soon after being allergic to Copaxone, so will be borrowing everyone's ideas about how to minimize things. Nevertheless, I know I may never be side-effect free. Even Quix isn't, totally, though she's got them down to the bare minimum.

Don't be worried because you're having new symptoms, at least not yet. You have been on Avonex for 4 months, and from what I understand, that's not long enough for it to reach full effectiveness. I believe you still have a few months to go. And even then, things might be so much better than if you didn't have Avonex, despite the symptoms that do appear. That's one maddening thing about all the DMDs---they work statistically, meaning that on balance, large groups taking it have been better off than large groups not taking it. There's loads of wiggle room in each group however, and individuals can be very different from the whole.

I'm sure Quix can give you further info, as well as many others here. My own advice is to stick to it for another couple of months, and at that point confer with your neuro even if you feel great.

Hang in there,
ess

[tanky]

Sorry to hear you're still experiencing some side effects from the Avonex.  Hopefully, with the additional reduction in dosage you'll feel better soon.  Like you, I am relatively new to Avonex (started Dec. 07) and am still experiencing new symptoms.  I suppose its hard to know if its working or not since the symptoms could be worse.  Granted, I'm starting to have difficulty walking which is surprising to me since I was just diagnosed in November.  

As for a doctor's determination of RRMS v. the others, I have had some doctors tell me its definitely this or that and some have said those are more guidelines and each person can be different.  If you've had distinct relapses in the past, I'm sure you fit better into RRMS than anything else.  I am no doctor, but I keep telling myself that the new symptoms are just my body adjusting to the medicine.  Perhaps the case for us.  I certainly hope so.  I will keep you in my thoughts and hope that you feel better soon.

Niki