My 20 yr old daughter was recently diagnosed with MG. Monday she started IVIg treatments. After the treatment on day one she felt extremely tired and spent the rest of the day in bed. She also noticed that her symptoms were a bit worse. After day two treatment, the same thing. Her MG symptoms (weak tongue, nasal voice, ocular effects, generalized muscle weakness) seem more pronounced and her mestinon doesn't correct them as quickly. It's not terrible, but we thought she would feel better not worse. This is day three and she has to complete 5 treatments.

Question: is this typical with IVIg in MG patients? worsening symptoms?

Otherwise, she hasn't had any side effects (like headaches).

Thanks for your help,
Cait's mom (Sarah)

Yes that is normal for me. I feel terrible when I get home. Sometimes flu like symptoms or minor headaches. I think the IVIG really helped my double vision. but it took 4 series of treatments. I need IVIG about every 45-60 days.
Mike

I've gone from 21/2 hrs. to 4 hrs. on my infusuin time and it made a big differance on how I felt after. One of the paitients I see at the ifusion center is on the tube for 6 hrs. Doctors orders.

You may want to see if slowing down the infusion rate may help your daughter.

Tony

I agree! Also lots of water before and after.

The infusion center and/or nurse can make a big differance too no matter how sweet the nurse seems to be. I switched infusion centers whe the nurse put me down to 2 hrs. one day so she could make it to one of her childs activities.

That center did not have any guidelines on the time and rate of infusions. The company that I am at now has a 4 hr. minimum.

Tony

After my infusion, takes cpl days to start feeling better....& it takes at least 4 hrs, sometimes almost 5....I get it once a month & that week before, the difference is sometimes alarming...need it more often, but the travel distance & whole day it takes is just too much...

Dottie

Tony, Caitlin's infusions are taking about 3 to 3.5 hours. They slowly increase the infusion rate three times during the session. They tell me it is a conservative approach.
She hasn't been drinking enough water and today the nurse insisted that she have 8 glasses during the day. She doesn't like drinking all that water, but I hope she'll feel better this afternoon.

I drank plenty of water. It feels like I have the flu, severe headache, nauseous, weak...etc. I'd have to say the headache is the worst though, the throbbing is sometimes unbearable feeling..

Took Cait to the ED yesterday morning because of severe headache, neckache, back pain, low grade fever (100.5), and vomiting. This was the morning after the 3rd IVIg dose.
The ED team was pretty unaware of MG, so had to consult with our Neuro. After 9 hours in the ED he came to see her and diagnosed her with asceptic meningitis. Gave her 2 tylenol, zofran for nausea, IV benedryl, and solumedrol. That helped A LOT! The headache dissipated and we were discharged.
Today she had dose 4 of the IVIg but he had ordered pre-meds of benedryl, solumedrol, zofran and aleve. She tolerated it well and two hours later she's resting in bed. I hope she doesn't get that blazing headache again. Tomorrow is the last treatment. Not so fun on Christmas Eve!

bny806, I want to thank you for posting your questions about asceptic meningitis yesterday. I had read your posting the morning she went to the ED so I was prepared for what was to come. I can't thank all of you enough for this forum and keeping me and my daughter informed. It feels good to be speaking intelligently with the docs.

Question: do you find the Aleve works best for the IVIg headaches?
Is spacing out the IVIg treatment better every other day? Our home infusion nurse said that other patients seem to do better when the infusions are spaced apart by a day.

Mine are spaced 2 a week for 2 wks then one the last week but that is because of my age (71). I don't get pre-meds and a pretty fast rate (2hr 15 min). I sometimes get a headache but over the counter meds work.
Mike