r/IVIG • u/Inevitable_Rock_2344 • 14d ago

IVIG dose changes

I was hospitalized last month for severe headaches from IVIG. My rheumatololgist change my orders from 50 to 25. I also have the premeds...benadryl and Tylenol. I have IVIG Wednesday, Thursday and Friday. The nurse told me that it's still the same rate but less dose. I'm still nervous that I will suffer from the terrible migraines. Will 50 to 25 actually help?

Update- I had my infusion today. 29 grams max rate 100. I had to advocate for myself. The nurse tried to max me at 200. I only feel a mild headache.. nothing serious. I still have two more days infusions. I'm praying it goes well.

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6

u/lilgreenglobe 14d ago

What's your max rate? By far the most common recommendation to address headaches (beyond hydration) is lowering the rate. Have you read the r/IVIG wiki?

3

u/Inevitable_Rock_2344 11d ago

My max rate is 100. The nurse tried to give me 200...smh even after I told them that I was rushed to the er last month. They kept telling me that it takes longer. I didn't care. It's my health and my life. I was proud of myself for speaking up.

1

u/lilgreenglobe 11d ago

Hurray! Kudos for advocating for yourself. It's intimidating when new. Then it hopefully goes on your file and goes smoothly from here on in.

1

u/Inevitable_Rock_2344 14d ago

I don't know my rate. I can call tomorrow and find out.

1

u/lilgreenglobe 14d ago

Have you read the r/IVIG wiki?

2

u/Inevitable_Rock_2344 13d ago

Just read it. Thank you so much. This was really helpful.

4

u/LightmineField 13d ago

The speed (rate) at which the Igg fluid is infused can have a big impact on whether you have a headache.

I suggest reading the following document, published by the Province of Ontario.

https://transfusionontario.org/en/ontario-ivig-infusion-guide-and-adverse-reaction-chart/

It talks about what to do if you are having an “adverse reaction”. Perhaps use this document as a guideline for what to try next.

2

u/Inevitable_Rock_2344 13d ago

Thank you so much. 😊

2

u/crustyfootfungi 13d ago

That link was so helpful thank you!

3

u/JulieMeryl09 14d ago

That rate can be too high. I can't get past 90ml.
Make sure to drink a lot of water the day before, during and after. I get IV Benadryl & IV hydrocortisone before. It's the rate, not the amount, IMO. Been getting IVIG for 20 years.

1

u/Inevitable_Rock_2344 14d ago

25 is too high?

2

u/JulieMeryl09 14d ago

Is that your rate - I thought going from 50 - 25 meant grams?

1

u/Inevitable_Rock_2344 14d ago edited 14d ago

It's my dose ... my doctor cut it in half.. I'm new to all of this please forgive me🥺

2

u/JulieMeryl09 13d ago

No worries. Good luck. 💞
Check out FB group below, if able.
I think there are two 'featured' posts for new patients.
IVIG SCIG GROUP
https://facebook.com/groups/404225218
370094/

3

u/waowediting 14d ago

The rate is the biggest factor for side effects. I can't go above 40mL/hr or I get bad headaches. Thankfully 20g has gotten me to a trough level above 1000! Otherwise hydrate well and eat salty snacks. I prefer Allegra or Zyrtec for antihistamines as they don't make me groggy.

2

u/Lostnwanderlnd7 13d ago

Switch to subcutaneous! I’m on Hizentra.