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Immune Disorders Message Board


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First post. Very sick. Have suffered severe dry eyes/mouth etc four years.
Recent Dx of hypogammaglobulinemia - CVID. Had first IVIG infusion 2 weeks ago which went well with no premeds. Day after infusion had reaction when blowing my nose with toilet paper. Felt like I had toxic reaction. Days following noticed much increased dryness of eyes, mouth, nose etc. Unbearably so and now I am so scared. Doctor's office says no relation the IVIG and much worsening dryness. Has this happened to anyone else? If, yes, did this reaction resolve? Any explanation why this happened? Ramped up my immune system for further attack? IGA reaction?

My Sjogren's and associated tests neg. I can cry emotional tears but seem to have very little oil from glands. Very sensitive to light/glare.
Lyme and Bartonella tests indicate probable infection.

My labs before infusion:
IGG
Total 576 (700-1600)
Sub 1 349 (422-1292)
Sub 3 26 (41-129)

IGA
Total 91 (70-400)
Sub 1 49.6 (58.2-263.5)

I was told that since I am low in IGA I was supposed to receive low IGA IVIG ie Gammagard SD. Instead I was given Carimune which past days research seem to indicate Carimune is very high in IGA. Could this account for my reactions? Doctor has stopped orders for further IVIG. I am devastated about this. I know the IVIG did something to make my dryness 50 pct worse. I had not expected to be hit in the areas where I already suffer.
Had hoped IVIG would act as expected as immune moderator. (?).
Please, any help appreciated.
Tks. I got Carimune NF. Unable to verify the IGA content. It is either very low (trace?) or very high. Don't know if that would play into my increase in dryness. It has been 2 weeks since infusion and still bad.
There has got to be an explanation for this but I cannot get answers.
I am beyond miserable and so scared this result will remain.
Buck - you had IVIG with no premeds (ie drying Benadryl) and felt that after the infusion your eyes/mouth were more dry than before the infusion?
Tks replies. Does Gamunex come in liquid?

Buck - I am sounding like a broken record. Forgive me for asking - you felt more dry after IVIG? "Blamed" the extra dryness on the IVIG?

IVIG is supposed to be immune system modulator. Why is it not written that IVIG could help against Sjogren's ie dryness etc? One would think IVIG would calm down the attacking of the glands, but I have not read that anywhere. Reasons one way or another. Praying it could not possibly make things worse. Did it with me and maybe you? I make antibodies to various things tested for. ie Lyme, EBV, HHV6, etc. But nothing in four years in regards to Sjogren's. AB tests neg., RF and ANA neg. Will repeat (?) that I read where Sjogren's patients usually have high immunoglobulins and low WBC count - and I am the opposite there. I am trying to set up another IVIG infusion because I feel sure CVID is large part of my fatigue, pain etc problems. Where the dryness comes from I don't know and I don't want that to worsen. So very concerned.
Must pop in and agree. I had horrible side effects from IVIG and due to recommendations on here, went thru 4, yes four different brands :) I ended with Gamunex no faster than 100 ml/hr. Too fast on your infusion can increase pain already there (much worse). Gamunex was awesome, zero side effects, only one where I was not bedridden with migraines. Privigen was very good as well. I have one of those charts. I think it was from the...oh shoot I don't want to get moderated. You can PM me and I can maybe find a link to give you where to get the brands. But try Gamunex and slow down your infusion :) Good luck.
Yes slow infusion and frankly Gamunex has an excellent history. Your provider looks at reimbursement and each one has a different rate.....Take a look at a chart if you can. Also a liquid is already mixed properly ( less room for error), has the nurse to slow the infusion way way down. Good luck......O





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