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Dysautonomia, IVIG and possible reaction


Guest ANCY
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Guest ANCY

Just wanted to ask if anyone using IVIG as a treatment for immune caused dysautonomia has ever had negative reactions with it? 

I'm back in the hospital, they think maybe I have sepsis because I have SIRS and with my history. However ID is not convinced and thinking that maybe IVIG is making my body crash and maybe caused the Pulmonary Embolism 3 weeks ago. Thinking maybe Mast Cell might be playing into it but not officially diagnosed. 

Anyone who could share their experience with IVIG would be greatly appreciated! Thanks so much!

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Hi,

I’m sorry you’re having such a rough time. I’ve been on ivig for 6 years for CIDP. It hasn’t helped my pots symptoms though. Ivig can cause a lot of side effects, and I have read that pulmonary embolism can be one of them. I had a thought...your footnote says you have an IgA deficiency. Were you tested before you started Ivig? I was tested for this before I started and I remember the doctor said that a deficiency can cause trouble with Ivig. I don’t remember what, but he said that you shouldn’t get it if you have the deficiency.  It may be something to look into. 

Also, maybe they can play around with the dose, like dividing it up over two days, slowing the infusion rate etc. I also find that drinking water before, during and after the infusion really helps.

Hang in there, hopefully they will figure it out soon. 

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Guest ANCY
2 hours ago, blizzard2014 said:

Have you ever been tested for blood clotting disorders? Hughes Syndrome sometimes goes along with dysautonomia. I also have that and Factor 2 Mutation. APS usually causes clots when your body has an infection too. I hope you feel better soon. 

Thank you, I will have to look into that. We've never explored any clotting disorders. Unfortunately they just told me one of the cultures is positive so have sepsis for the 8th time... Really hard to hear because I really don't want to loose my port... 

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Guest ANCY
1 hour ago, Clb75 said:

Hi,

I’m sorry you’re having such a rough time. I’ve been on ivig for 6 years for CIDP. It hasn’t helped my pots symptoms though. Ivig can cause a lot of side effects, and I have read that pulmonary embolism can be one of them. I had a thought...your footnote says you have an IgA deficiency. Were you tested before you started Ivig? I was tested for this before I started and I remember the doctor said that a deficiency can cause trouble with Ivig. I don’t remember what, but he said that you shouldn’t get it if you have the deficiency.  It may be something to look into. 

Also, maybe they can play around with the dose, like dividing it up over two days, slowing the infusion rate etc. I also find that drinking water before, during and after the infusion really helps.

Hang in there, hopefully they will figure it out soon. 

Thank you, yes, they ran IgA testing and the risk is for anaphylaxis. Fortunately I don't have the antibodies that would cause the problem so pretty safe. They do give me benadryl before the infusions. Thry do fun it really slow over 2 days, ive been doing my best with trying to get fluids through J tube but also have been able to do a liter of saline on ivig days. 

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Guest ANCY
4 hours ago, Weary said:

@ancy - what's a cardiac service dog?? 😀

(i've been considering ig treatment, so read thru this post. sorry to hear hasn't seemed to help people)

My service dog can alert me when im going to pass out. Gives me enough time to get into a safe position. My family is going to try and bring her to the hospital tomorrow so I can take a shower. She has prevented so many injuries, especially in the shower, so will not shower without her. 

Sorry that it came across that way, I do benefit from IVIG but if my recent troubles are linked to IVIG i think im going to have to discontinue. 

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