Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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/ Common Variable Immunodeficiency Support Group

Papilledema/Optic nerve swelling

ATOWifeofJason
ATOWifeofJason
Anyone have papilledema (swelling of the optic nerve caused by CSF pressure being too high). If so what caused it for you? High BP, trauma, meds? I get my eyes dilated evry few month since I receive IVIG. Just wondering if any of else has had this come up. My dr said it could be a risk factor for any blood products. I also take a low dose of Methotrexate and so now they are really stumped. I am always the strange case.
twisted4life
twisted4life
Hey there.... Did your Dr DX you with Pseudo Tumor Cerebri aka Intercranial Hyper Tension?

Based on what you described this should be treated as a co-morbidity and not a side effect. I have the same thing, and I take a diuretic-Lasix-to help reduce the fluid behind my eyes to avoid papilledema. An eye exam that includes dilation and a visual field test should be the norm, and it is usually good to see a Neuro, but ideally a Neuro Ophthalmologist. Maybe next time you see your Immuno bring up Pseudo tumor cerebri...it is extremely rare...many Dr's never see a case in their whole careers.
I have a friend who is an MD who also has PTC...I'll see if she can do a little write up of points to talk to your Dr about if you would like
In the meantime, if you notice any loss in peripheral vision call your Dr ASAP....

Anna :)
ATOWifeofJason
ATOWifeofJason
They have not ruled it out...but he said the swelling itself could be a direct side effect of the ivig and some RA drugs. The next steps are MRI and probably a lumbar tap to get a reading of how high the csf fluid is. Also a full eye exam is scheduled for next week after he speaks with my hematologist/oncologist amd my ra dr. They are rulinf things out that could be associated like high BP and other things.
twisted4life
twisted4life
Sounds like you have good Dr's who are ruling other issues out before they go ahead with the spinal tap, your dr has your whole team involved which is great..

I hope everything goes well....feel free to ask questions...I've had PTC on and off for 18 years.

Anna