Getting Very Anxious

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Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 3/20/2016 9:36 PM (GMT -6)   
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

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/21/2016 12:09 PM (GMT -6)   
I hope everything is straighten out by now. Best of luck in getting everything together.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 3/21/2016 12:49 PM (GMT -6)   
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.
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 3/21/2016 10:03 PM (GMT -6)   
Hi Melissa D. I'm sorry I didn't read your post sooner. I had IVIG Sunday. My pre-meds were oral Tylenol 650 mg, IV Benedryl, and IV hydrocortisone, but NOT solumedrol. I found a good magazine/web site in the waiting room called IGLiving.com that you might find interesting.

The first couple of infusions wiped me out, but then I also started Benlysta infusions and I could no longer tell which was causing me to feel awful (so exhausted, tired, fatigued, other adjectives). My IVIG infusion Sunday took 3 1/2 hours and I slept the entire time, even when my attending nurse hooked up my second bottle. Later at home I took a 3 hour nap, slept 'til 11:00 today and had a fairly productive day by my standards. Thought I'd check the forum before bed.

Sweetie, if you don't feel comfortable with taking this, you really should sit down with your doc and tell him. Also, you need to ask him to spell out why he thinks you should take IVIG. Keep us posted, okay? Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 3/22/2016 9:04 AM (GMT -6)   
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
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs
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