Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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First IVIG went okay

deleted_user
deleted_user
Just wanted to check in and say that the first IVIG infusion went ok. I didn't feel nearly as bad as I expected, but wow, I was exhausted and achy and feverish for days, but that is nothing compared to what it could have been. Now I am back to my normal level of feeling icky... next infusion Jan 8, 2013
Since I did have some trouble with headache,rash and itching at the infusion center they will be pre-medicating with Benadryl before the next treatment, and I will be taking a couple of my RX pain meds ahead of time as well.
I hope everyone has a very Merry Christmas! Cindy
deleted_user
deleted_user
I am glad your infusion went as well as it did. Remember to hydrate well the day before, day of, and day after. Gatorade and water are great. I take tylenol ahead of time and then for about 24 hrs after.
countr
countr
I am glad everything went as well as can be expected. Sometimes it takes a few infusions to determine pre and post meds that can help. In almost 5 years I've only had a rash twice. The headache can rate from slight to severe. It sounds like you did everything you could and that's important to decrease the side effects. I hope your next IVIG is even better.
deleted_user
deleted_user
Thank you both. I can't take Tylenol or other OTC pain relievers, but have some Norco from my Pain Management doc that I will be using instead. I bought a case of bottled water and a big pack of Gatorade before the infusion and I know staying hydrated made a big difference and plan to do the same for each infusion. I drink alot of water as a general rule so that was pretty easy, just tried to double my normal intake the day before and the day of. I think the worst part was the exhaustion for days after. I raise my 6 year old grandson and had absolutely NO energy, fortunately I do have a good support system and had friends and family helping with his needs as well as checking in on me. I just feel blessed that this treatment is available to me, and am counting on feeling much better down the road. :)
kelli1b
kelli1b
So glad it went so well for you!

BTW, I take Norco as well and it has Tylenol in it (dosage on mine are 10/325 - 10 being the amount of pain med and 325 mgs of Tylenol) so I don't add ADDITIONAL Tylenol on top of it either. You should be fine just let the nurses no why you are declining the additional Tylenol. Keep ups updated! It will be gradual but you will feel better, not perfect and far from normal but it can be manageable!
deleted_user
deleted_user
Thanks Kelli, that is the same dosage I have, and I let them know when I went in that I brought it with me and they seemed fine with that. I have had problems with my liver panels in the past , which is why my doc changed me to this dose because it has the least amount of Tylenol.
I will be so happy to start feeling better! Manageable & functional would be a big step up for me. I think normal is over-rated ... what's normal for me is to be sick all the time, so I would be happy to step away from "normal" :-)
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