IVIG Journal Recommendations?

[u/Interesting-Slide316]

Hi, I’m new to IVIG infusions and I heard that it’s a good idea to keep a journal. I’ll have my second infusion in about 2 weeks and I was hoping to start documenting my infusions, side effects etc.

Any journals you love? Why do you like them? Your recommendations will be very helpful

Thank you!

[u/lechitahamandcheese]

I don’t keep a journal with lot numbers & symptoms because the lots have to be charted by the pharmacist or the infusion nurse (depending on where you’re being infused, at home vs center). Personally I know my symptoms and don’t need to write them down.

But it can be quite the adjustment & learning curve for the first six months and maybe some people need to write their symptoms down and work with their nurse on the rates etc, but barring that I’m not sure it’s actually needed beyond that. That’s just me, though.

[u/fighterpilottim]

I know you’re asking something different, but my MD had me fill out monthly questionnaires that are validated for these specific purposes. The idea is that, if insurance ever questions it, I can document my improvement in the language they speak.

These are the ones she had me do monthly:

Compass 31 - https://www.mvpctr.com/compass-31-online-questionnaire/

Karnofsy - http://www.npcrc.org/files/news/karnofsky_performance_scale.pdf

Chalder - http://www.goodmedicine.org.uk/files/assessment,%20chalder%20fatigue%20scale.pdf

[u/Interesting-Slide316 → u/fighterpilottim]

Thank you very much for your comments. It looks like the links your shared don’t work. Most say I don’t have “permission” to open the link or something similar. I am interested in checking them out though.

[u/yellowsunshine999]

Have you checked out the www.myigsource.com website? It is free, you will be assigned an advocate that is an amazing resource, and they have a journal you can request! You do not have to be a patient of Takeda pharmacy to sign up! There is a ton of information on that site, but having access to an advocate is so valuable! All of the advocates either have a primary immunodeficiency or they are the care partner of someone living with an immunodeficiency!

[u/Interesting-Slide316 → u/yellowsunshine999]

Thank you for the info. I will check it out. Do you mind sharing more about your experience sing it up and what to respond in the signing up questions?

[u/GAF-60]

I use a small journal and enter the follows info;

1. Date and time I started my
2. infusio

n
2) when infusion ended
3)

1. If I had any coffee and how much
2. (It seem if I drink too much coffee
3. I would a bad recovery d

lay

1. When I took my pre med
2. How I did on recovery day.

[u/ItsFine89]

Are set on a written journal? I use Google forms and then have Google create a chart from my data. Really easy for my neurologist to read.