Starting IVIG In December

[Learner1]

@Learner1 They give it to me for autoimmunity. I have anti rach antibodies and a mild 1: 200 ANA. IVIG helped me a lot. I have lymphocytopenia and am prone to reactivations of herpes virus. They don't care about it and want to give me rituximab, but it worries me. Do you have cognitive symptoms? That improved with rituximab?

I will PM you. Yes, Rituximab helped.

 

[Xana]

I usually get 500ml saline after the infusion but it can be given before.

I have gotten between 1-2g SoluMedrol per kg body weight. The next day, I take dexamethasone in 1.5mg pills, every 4-6 hours, then every 8hrs the next day

I get 50mg Benadryl IV before the infusion, then 37-50mg every 2-3 hours during the infusion and 25-50mg every 3-4 hours for the next 2 days

I get IV ketorolac, an NSAID, for brain swelling before the infusion then 500mg naproxen as needed for the next 2 days (though because NSAIDS can affect microbiome health, I try 1-2g of designs for Health CurcumEvail and 1g Thorne Boswellia instead)

I get 2g IV lorazepam prior to the infusion to stabilize mast cells, and never any other time. This knocks me out for about 3 hours.

Given your previous experience, having further interventions similar to these to reduce brain swelling might be wise.

I went to the ER twice early on, due to screaming headache and stiff neck and was given IV dexamethasone, Toradol, and Benadryl both times, so I learned to head it off at home with the above drugs.

Its a lot, but I've been doing this for 4 years now, and it's a routine.

Wow! all this information is appreciated. ❤

 

[crypt0cu1t]

@crypt0cu1t When you talk about remission, do you mean your old self? Did your tinnitus or cognitive problems ever completely disappear?

I was about 80% still had minor visual symptoms and a bit of tinnitus with some mental fatigue but it was much improved. To me 80-100 is basically remission

 

[Xana]

How are you Did you get the dose of ivig? I hope they helped 🙏

 

[crypt0cu1t]

How are you Did you get the dose of ivig? I hope they helped 🙏

Hey I got ivig and felt slightly better for about two weeks then flared horribly and have been there since

 

[Xana]

Are you taking any kind of immunosuppressant? I was able to alleviate the worsening after the IVIG with 2.5 prednisone wears off permanently.

 

[Xana]

I'm so sorry that you feel worse. I hope this flare passes soon.