Tovaxin Update
 

Interesting day yesterday. I was supposed to get Tovaxin vaccine #4. But as some of you may have read in another thread, I am having one doozy of an exacerbation.

I meet with the neuro Thursday and by definition, I am having a "protocol defined" exacerbation. So he ordered a 3-day round of IVSM but agreed that I could do them at home and not spend the extra few days in Portland. (like he thinks he can make me stay there LMAO! )

Friday morning I get a phone call from the clinic and my Tovaxin vaccine has been cancelled. :eek: Wha???? The nurse said the company didn't want to give it to me while I was having an exacerbation.

I flew home last night instead of later today. I start the 'roids this afternoon and will be done Monday.

I won't know anything until Monday about why they didn't do the vaccine. I wonder if they will reschedule it for another time or slide the whole schedule or what? :confused:


Missy AMN will be happy to know that I got sherped to the gate for my flight and sherped to baggage claim and to my car when I got home. Nice sherpas! :p

Good doggy, here's a cookie. You must admit, it's rather sherpendipitous to save that agonizing waste of energy!

That's sort of odd, FG, it makes me wonder if the vaccine can't mix with the roids, thus the 1-time rule. Hm. And he didn't say why no vaccine? We need to know!!

Flygirl, you know I'm not a lecturer, per se, but with many years of this under my belt, I believe that you would do well to take the rest and pacing more seriously to shorten this thing and to avoid another one. I sure would hate to see you lose your place in the trial! I do realize that this is your busy season, but please do more managing and less labor!

Mary says that the 'roids interfere with a vaccine response for about a week. So, I guess that's the "official" answer from Dr. Mary.

You know, the sherpa sherped me all the way to my car! Cool, huh? I couldn't have walked that far to the gate if I had wanted to....:( :mad:


I'm not going to have any choice in the matter for the next couple of weeks anyway. 'roids knock the wind out of my sails for about 2 weeks. I get the exact opposite reaction as most people. I don't get that burst of energy...I get lethargic and sleep. In fact, I do them at the hospital out patient clinic now b/c my BP stays so low that the home health nurse started panicking.

Sorry that you have to do the roids :( Here's hoping you are feeling better real soon!

Hi Cheryl,

It takes 30 days for the steroids to wash out of your system. Since steroids not only reduce the inflammation, but also suppress the production of white blood cells, your treatment cannot resume until 30 days after your last steroid treatment.

Thanks Tim. I don't know what's going on right now. The trial doc and study nurse are out of town until next week. I don't even know if they know that the vaccine was cancelled yesterday! So I just flew home last night and got started on the IVSM.

I don't know if the vaccine schedule will be rewritten or anything. Guess I will wait til they all get back from wherever they are!

Right now I just need to get over this flare.

Tim, does this mean that a person could continue with the treatment if they just opted out of steroids to treat the relapse?

Cherie

I can answer that. Yes, b/c I did that already.

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

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!!!!