I’m sorry you had such a terrible experience with IVIG. It should not have happened.

There are a few things you can do to help with side effects.

1) HYDRATE, HYDRATE, HYDRATE! Make sure you are drinking water 24 hours before your infusion & drink it until 24 hours post infusion.

2) Pre-medication! Most people take Benadryl and either Tylenol or Motrin. Some people need to add in a very small dose of steroids.

3) Ask to be given the IVIG at a slower rate. Make sure it is started off at a low rate & then slowly ramped up to the highest speed. My daughter gets 20 grams & her infusion takes about 2 hours 45 minutes. She starts off at 13 (I think) and the max is 100.

4) Make sure you are receiving the same brand for every single infusion. Some hospitals will mix & match. Meaning one day you might get Gammaguard & the next Gamunex.

5) If you are getting infusions at a hospital ask to only have nurses who are experienced with IVIG. Just because a nurse works at the hospital doesn’t mean they know everything about every medication.

6) If you ever get another loading dose you can ask to get the IVIG every other day. I read a study a few years ago suggesting women should get a 5 day loading dose every other day as opposed to every day. I don’t remember why it was suggested though. (Maybe you could use Google to find it).

Something I tell everyone who is knew to CIDP is to keep a binder full of your lab results, copies of rx’s, dr’s notes, IVIG batch info, etc. It also helps to keep a daily journal of how you are feeling. It’s nice to look back a year later & realize how much you’ve improved.

My daughter went from barely being able to walk, not able to open & close her hands, & not being able to lift her arms to feed herself, to running, jumping & catching balls within 24 hours of her 1st IVIG treatment. She had eye issues (her right eye was paralyzed looking in towards her nose) and that took a massive amount of IVIG to repair (like 300 grams given over 6 weeks). After 4 years on IVIG (just last summer) she was finally able to climb a rock wall.

There is usually improvement that you will notice first & then slowly the body will start to repair itself. You may not notice the small things at first until 1 day you go “WOW…I can do X now”.

Kelly

I have been receiving IVIG treatments for CIDP for a little over 2 years. After the first treatment I was so sick that I didn’t recognize improvement in my strength for almost 2 weeks. Results have shown up quicker with subsequent treatments (a week or so). My treatment seems to last about 4 months. Have been on semi-annual treatment, but moving to 3 times a year now. However, the results from the IVIG are nothing short of a miracle for me.

Side effects can be brutal. Initially, I got a rash over most of my body that started a week after IVIG and lasted 6 weeks or longer, even with the steroid cream prescribed by a dermatologist. My doctor changed me to Gammaguard and added Prednisone (20 mg day before, 20 mg day 1, and 10 mg days 2 and 3). Not sure which made the difference, but the rash has not been seen since.:)

The headaches are another story. Pressure type pain (severe) with stiff neck and some nausea. Usually lasts 3 to 4 days. With me it starts the day after I have completed IVIG.

I do get Benadryl and Tylenol before IVIG. Learned last year to hydrate before and after (Smartwater and Gatorade were recommended).

The treatment is very effective for me but would love to find something to ease the headaches. Anyone had any success with headache treatment? I spend at least 2 days in bed after each IVIG.

Don’t expect ‘miracles’ right off the bat? For me, the change was just a little one at first – my numbness which was migrating towards the center of my body from arms and legs about 1-3 inches each month slowed down then stopped. Then it became less painful, you know how those dying nerves can protest or almost scream? They didn’t shout out their displeasure, just yelped it out now and then, then just continue now to ‘humm’ at a low pitch.
After my loading dose followed by another slow infusion 4 weeks later, I was able to walk and shop for a whole hour for the first time in a year! What a simple joy!
At first, it’d only last about 3-5 days, but that was soo much more than before!
Seek? I don’t know how long it’s been from your onset to getting the infusions? But now is the time to ask your neuro about finding a good physical therapy practice! I found it helped me re-learn to walk and regain balance doing at times, what seemed like simple or silly ‘things’- the exercises were not the ‘go get ’em’ sort of workouts, but rather slow and methodical not pushing yourself to ‘overdo’ type of ‘challenging drills’.. to overdo all at once is asking for potentially more damage.
Beba? I believe I’ve tried to answer your question on another post. I’ve found that a good solid nap once home from infusions helps too.- Good luck!

Hydrating (drinking water) while using IVIG is important to prevent aseptic meningitis.

What is meningitis? It is a bacterial infection of the membranes covering the brain and spinal cord. These membranes are called the meninges.

What is aseptic? Well, the ‘a’ refers to ‘not’ and the ‘septic’ refers to infected. Therefore, aseptic meningitis is meningitis that is not bacterial, or at least, no bacteria will grow when cultured.

What’s my point?

The point is that ‘we’ take in large amounts of IgG which has a half-life of 22 to 96 days. The doctors at Mayo Clinic, Mn told me that my headaches were caused by a reaction between the IgG and the meninges, which causes the meninges to swell.

The solution? Drink more water.

Now, for my Rhetorical question to ya’alls- Are you going to drink ‘more’ water on the day before and the day(s) after infusion only?

Or, are you going to drink more water up to the half-life, or beyond, of the higher IgG concentration?

It’s an individual decision.

Thanks for helping to clarify that.

It sounds to me as if she’s having an aseptic meningitis reaction from the IVIG. I would think if she did well with the plasmapheresis that should be her treatment instead of the IVIG.

I would call the neuro & explain what she is going through & ask for a plasmapheresis ASAP to see if it helps. Maybe the dr could prescribe a dose of steroids to help with her reaction.

Does she premedicate with Tylenol or Motrin AND Benadryl before each treatment? Does she drink water before, during & after each infusion? If she’s getting IVIG on consecutive days dr’s sometime order you take the premeds around the clock for the duration of the treatment schedule.

If that doesn’t work a dr will order a small dose of IV steroids to help with any reactions.

Did you mean she was diagnosed with CIDP/sensory neuropathy & not GBS? GBS isn’t usually treated long term with IVIG but CIDP is.

Kelly

Does your mother see improvements from the IVIG?

What rate do you run her IVIG at the clinic? What rate do you start at? How many grams of IVIG does she get? Would her neuro be open to exploring sub-q IG?

I’m wondering because I’ve heard of people who need 12-24 hours to complete their infusions due to aseptic meningitis reactions.

Have you looked into taking her to Mayo or one of the foundation’s Center’s of Excellence? You may be able to at least get a firm diagnosis.

Kelly

I, too experienced terrible headaches. After 3 months with unrelenting headaches/naseau/vomiting – and a 25 pound weight loss, neurologist changed brand from Gamenex to Gamagard. I get weekly infusions and get infused at a starting rate of 50 and only recently (after 8 months) moved to 55, then 60 rate. I receive 25 grams now, down from 30 grams. Benadryl before during and after infusion; benadryl at night until day 4 post ivig (or until the inflamation in lymph nodes goes down). Tylenol for post ivig malaise and aches. Migraine meds at night after infusion, typically one or two tablets within 24 hours of infusion. Headaches are now manageable. Push back hard if you are experiencing headaches – call your pharmacy to get their input; consult with your GP for moral support. Let your neurologist know you are not satisfied. When I put my findings in writing to my neurologist, with a copy to my GP and pharmacy (ivig supplier) I finally got some action. Hope this helps.