How long will IVIG take to work?

[crypt0cu1t]

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??

 

[mitoMAN]

it can make some worse.
I am 5 months in and have close to zero successs at 1gram/kg

 

[Judee]

I hope more people will respond.

@Gingergrrl, @Learner1 any ideas?

 

[Xana]

I have known people who have reacted with rashes when the speed was fast. Are you receiving ivig at an adequate rate?

 

[Learner1]

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??

it can make some worse.
I am 5 months in and have close to zero successs at 1gram/kg

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.

Ive attached a write up that explains the various mechanisms by which IVIG attacks autoimmunity. It is not fully researched, and I know if no way of being able to tell which mechanisms are active in any one of our situations.

In my case, this is what I have experienced:

• Headache and stiff neck with all infusions, mitigated by low drop speed, infusion of additional 500mg saline, lorazepam as a mast cell stabilizer, SoluMedrol 24 hr steroid, ketorolac an NSAID, benadryl every 2 hours and every 4-6 hours for up to 3 days after, and dosing curcumin and boswellia regularly for 3 days
• Symptoms lessened after switching gammaglobulin products
• Vast improvement of autoimmune symptoms after concurrent use of Rituximab given 28-27 months in
• Gradual reduction in side effects over time
• Effectiveness of treatments for multiple herpesviruses and chlamydia and mycoplasma pneumoniae after previous pre-IVIG attempts failed
• Reduction in sinus and other infections over time
• Overall better health around IVIG treatment days

It is not a quick, miracle treatment but one used best by an expert immunologist with your idiosyncrasies in mind, adjusting and adding treatments as you report symptoms.

 

[Xana]

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 🙏

 

[Learner1]

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 🙏

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.

 

[Gingergrrl]

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??

I'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?

 

[crypt0cu1t]

I'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

 

[Gingergrrl]

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

Do you know if you are receiving a high enough dose of IVIG for autoimmunity (for your body weight)?

 

[Xana]

I'm so sorry they haven't helped you yet. I hope you notice relief later.
I know perfectly how you feel. I wonder if I won't have AE as well. I had all of the symptoms you describe, but the IVIG improved and I am now able to watch television or have a moderate conversation. But I still have many symptoms.
It is curious to me that my first IVIG infusion gave me a strange flare as well (photo attached).
Hope you find relief soon.

 

[crypt0cu1t]

Do 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

 

[Gingergrrl]

It equals out to about 1.5g/kg

Is that the same dose that you got in the past when the IVIG was helpful? How are you feeling now?

 

[crypt0cu1t]

Is that the same dose that you got in the past when the IVIG was helpful? How are you feeling now?

It’s actually more than I got last time. I’m still bedridden in a flare.