Getting Very Anxious

Hello Everyone,

I'm sorry to keep bothering you all wth this, but I have my first IVIg treatment Tuesday morning and tonight as I got in bed I had a massive anxiety attack. Thing is I almost died at the end of September and then the first of October from major anaphaxic shocks from Benlysta and then the Flu shot. This will be my first infusion/treatment other than oral medication since I was in the hospital with that.

To top it off my Rheumy is saying I need to be infused at a very slow rate, first he said 2 to 3 days and then he said it could be up to 5 days! And the infusion center is saying no they can do it in one day in 5 to 6 hours. I just did some research and it appears my Rheumy is right, the right infusion is recommended to be spread over 5 days. Some say the least you should go is 40 grams 40 kg of body weight, which would make it a 2 day process for me.

Either way I'm freaking out at this moment, which I realize is irrational because it's 10:45pm and I can't get any answers this time of night. I have sent an email to my Rheumy and will follow up with him and the infusion center first thing in the morning to ensure they are on the same page. That doesn't help the thoughts going through my head though...sigh.

One more thing, if anyone (Butterflake?) can answer, if you've had IVIg for SLE did you take premeds, i.e. Solumedrol, Tylenol, benedryl?

Thanks for giving me a place to vent

Melissa

Thank you Joy! I'm still playing the phone game trying to get this straightened out, calls have to go to my Rheumy in San Antonio, back to my pcp here in town then over to the infusion center. Nothing can be easy can it? My Rheumy's office tried to call the infusion center direct but they are unable to talk to them because they are "not local doctors with the local hospital" although the nurses know full well that is the actual doctor calling the shots. I understand they have to follow protocol though. Last call I received about 30 minutes ago they are still paying phone tag, I'm sure they'll get it worked out by morning though. Don't have any other choice but to remain confident.

Good Morning Butterflake,

Thank you for the info. Today's the day, they just hooked me up to the Octagram, so I'm thinking positive thoughts! My fears are stemming from the anaphaxic shock I had last fall from Benlysta, not so much the IVIg itself. This is something I have to overcome because my health has really declined since I've been unable to receive Benlysta, my disease is really active. My doctor believes the IVIg will reduce the inflammation in my body, mainly the brain and nervous system that is really being tartgeted at this time. I am really running out of treatment options, my body is rejecting many of the medications typically used and since there has not been another true Lupus infusible released he thought perhaps the IVIg might be of help.

Thank you for your support. I'll keep you posted on how this goes.

Hugs,
Melissa