crypt0cu1t
IG: @crypt0cu1t
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I started IVIG about 15 days ago and I’m now in another horrible flare. Shouldn’t ivig be keeping me from going into flares??
I started IVIG about 15 days ago and I’m now in another horrible flare. Shouldn’t ivig be keeping me from going into flares??
IVIG is a long term treatment. Unfortunately, we are conditioned to take a pill and feel instantly better, but this is not the case with many treatments. For some, IVIG works fairly quickly, for others, it takes time.it can make some worse.
I am 5 months in and have close to zero successs at 1gram/kg
The one only time I take lorazepam is by IV at the start of my IVIG infusion, and solely for it's mast cell stabilization quality. It is addictive and I would not want to take it longer or more frequently. But it has helped my brain swelling and intestinal pain reactions to the IVIG.Thanks for the information @Learner1 , it is very valuable. How did you take lorazepam? only for a few days ?? How does it help stabilize mast cells? thanks 🙏
I hope more people will respond. @Gingergrrl, @Learner1 any ideas?
I started IVIG about 15 days ago and I’m now in another horrible flare. Shouldn’t ivig be keeping me from going into flares??
The flare is from my AE and IVIG simply did nothing to stop it… really disheartening but I’m just wondering it it’s going to take more time to build in my systemI'm sorry I missed your tag @Judee and am just catching up on things.
I'm sorry you are still feeling so poorly @crypt0cu1t and wish I had an easy answer re: how long IVIG works for autoimmunity. I feel hopeful in your case b/c you had such a positive response to IVIG in the past. I wanted to ask you, is your current IVIG regime a high enough dose for autoimmunity (for your body weight)?
Also, is it the same brand that helped you in the past, and are you getting adequate pre-meds, and a slow enough infusion speed? When you said "horrible flair", did you mean from the IVIG itself versus that the flare was from your AE and the IVIG simply didn't improve it?
The flare is from my AE and IVIG simply did nothing to stop it… really disheartening but I’m just wondering it it’s going to take more time to build in my system
It equals out to about 1.5g/kgDo you know if you are receiving a high enough dose of IVIG for autoimmunity (for your body weight)?
It equals out to about 1.5g/kg
It’s actually more than I got last time. I’m still bedridden in a flare.Is that the same dose that you got in the past when the IVIG was helpful? How are you feeling now?