u/Another_Coconut5990

I was recently diagnosed with double-seronegative generalized myasthenia gravis. I have significant ptosis and muscle weakness that my neurologist appreciates on exam. I’ve been trying to work my way out of this disease without jumping into treatment, but my neurologist is strongly urging me to proceed with IVIG.

She initially felt that neither RNS nor SFEMG was necessary to support her clinical diagnosis, but I pushed to have the testing done. My RNS was negative, which has left me even more confused. She actually seemed surprised by the negative result. She is still comfortable with the clinical diagnosis and wants to proceed with IVIG, but is holding off on Rituximab until I have an SFEMG.

So…tomorrow is IVIG day.😭

I struggle with anxiety in general, and I’ve read quite a few stories about adverse effects from IVIG. I know everyone responds differently, so I’m hoping to hear some positive experiences and practical tips that might help me get through my first treatment without scaring myself to death beforehand.

I already asked them to run it as slowly as possible. Unfortunately, I wasn’t told that IVIG could potentially be spread over more than two days, and by the time I learned that, they didn’t have another appointment available for a month. So I’m stuck with 2 consecutive days, and because it’s being done on a weekend, the infusion center’s hours also limit how long they can run it.

My dose/rate

I’m 5'½" and 100 lbs.

I’ll be receiving a total of 90 g over 2 days — 45 g each day of Gammagard Liquid 10%.

Here are the infusion orders for each 45 g dose:

“Your original infusion rate based on your height/weight (155 cm/45.4 kg) would have been Total Estimated Time: 192 minutes (3.2 hours).

Your current infusion rate has been extended to Total Estimated Time: 324 minutes (5.4 hours). This is a safe rate, it is very slow.

Begin infusion at 23.6 mL/hour for 11.8 mL (VTBI) over 30 minutes.

Then increase to 47.2 mL/hour for 23.6 mL (VTBI) over 30 minutes.

Then increase to 94.4 mL/hour until bag empty (414.6 mL VTBI).”

My premedications will be:

• Tylenol 650 mg
• Benadryl 50 mg IV push

My partner is going to sit with me because I’m very sensitive to Benadryl and will probably be pretty sleepy/slow. She’s also going to help make sure they don’t accidentally speed up the infusion. 😅

I’ve been drinking a LOT of fluids and have been adding one Liquid I.V. per day. I packed a blanket, pillow, salty snacks and my phone charger, and I bought one of those migraine caps in case I develop a headache.

A few things I’m particularly nervous about:

• I’m prone to headaches and migraines with aura.
• I have pulsatile tinnitus, and I’m worried that IVIG might make it more noticeable.
• I tend to have low blood pressure.
• I’m not sure how frequently my vitals will be monitored during the infusion.
• I’m obviously anxious about the possibility of a severe headache, nausea, or other infusion reaction.

I’ll be receiving the IVIG at a Kaiser Northern California hospital, if that makes any difference.

For those of you with MG who have had IVIG:

1. Did you have a relatively easy first experience?
2. What helped prevent or minimize headaches and other side effects?
3. Did going slower make a noticeable difference?
4. Is there anything you wish you had known before your first infusion?
5. Does 90 g total over 2 days (45 g/day) sound like a typical MG loading dose for someone around 100 lbs?
6. Did anyone experience worsening tinnitus or other unusual neurological symptoms afterward?
7. Were your blood pressure and other vitals monitored throughout the infusion?

I know I can’t predict how my body will respond, but I think hearing some “I had IVIG and it was totally fine”stories would really help calm me down tonight.

Thanks in advance to anyone willing to share their experience. I’m trying very hard not to go into this expecting the worst.

Unable to take prednisone or Cellcept. Asked for Vyvgart, but told only for refractory disease. Was offered Rituxan for long-term control and IVIG as bridge therapy. Currently only taking Mestinon 60mg 3-4x day. I would love to hear your experience as far as the infusions as well as any side effects and if it helped your disease. I’m very scared of the side effects and how the IVIG will affect my life. Have a busy career and sounds like I’ll have to miss a lot of work. I have a phone appointment with my neurologist this afternoon and trying to think of any additional questions.

*edited to correct the word “transfusions” to “infusion”.