Originally Posted by yeahbut (Post 121554)

Hey Cheryl - how are you doing today? Sorry to hear about the set back!

Originally Posted by daisymay (Post 121568)

I'm thinking of ya too, FG!!! Sure do hope you feel better like, right now!!!! Sorry you have to do the roids, but we want you better....:sorry:

take care girlie!!!!

Originally Posted by Sweetyhide (Post 121595)

Cheryl,

I got your message. I still don't know how to reply to those things.
Total bummer that you are on the steroids. I hope it wont be too horrible for you.

Yep, what Tim said was told to me also. You do have to have a wash out period on the steroids before your next vaccine. My coordinator told me a number of times that I could not get the shots if I was in a significant flare.
I am not sure about it, Tim would know the technical side, but it has something to do with your T-cells changing during a flare? Maybe I dreamed that. :p

A few weeks ago when I was feeling really crappy I called my coordinator and we talked about if I was in a flare. If I had decided to go on the steroids I would have had to wait some extra time for my final shot. I will never go on steroids again anyway so it wasn't an issue for me.

Originally Posted by Av8rgirl (Post 121606)

I didn't have a choice. That's how bad I am this time. I haven't been this bad in over 2 years. I could barely walk into his office on Thursday. I hate this. I guess since it's early in the study, I can deal with it.

I think to reply to me, just hit the comment button?

Tim was a help with his answer.

Originally Posted by lady_express_44 (Post 121740)

I guess you wouldn't know if you are on Tovaxin or placebo anyway, but do you have a gut feeling on that based on your history and recent experiences?

I have had MS a LONG time, and had a couple of particularly bad paralysis attacks (where I didn't walk for months). My MS Specialists (two different one's) and doctor, do not normally recommended steriods, but I am comfortable with that as I have problems with so many drugs anyway.

Steroids are a quick fix for many people, however, to take or not take them is always a "choice". It seems they work quickly and well for you, which is good.

Cherie

Originally Posted by Av8rgirl (Post 121917)

Steroids are a quck fix and I have gotten to the point in the past year that I am balking at them now b/c I am getting sick on them. But I had no choice, and I mean no choice. The study doc treats when you have an exacerbation, especially one like this one. My EDSS went up 1.5 since May 24. Protocol to follow and all that. I don't want to get kicked out of the study. Non compliant and all that...who me???? Never! Stubborn maybe, but not non-compliant! LOL!

Now I wait to see what the next step it!

Originally Posted by Tim_ (Post 122130)

Hi Cheryl,



I am not sure what the frequency of treatment is in the IIb study. Whatever it is, your next treatment should be scheduled 30 days after the last steroid treatment. Don't schedule it any earlier than 30 days, and a few extra days after 30 won't matter.



Cherie

If the study neurologist believes that you are having an attack, I would take the steroid treatment. We are all aware that this is a double-blind placebo study. There is a 2/3 chance of getting Tovaxin and a 1/3 chance of getting placebo. At the end of 1 year, everyone in the study will be getting Tovaxin.

I am not completely familiar with the current IIb protocol. I think there is something in the protocol that says you cannot have a treatment while you are having an attack, or it might be that you cannot start the study if you are having an attack. That information should be in Cheryl's study documents that she signed before starting the study, and she can comment on that.