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Scared! Nephrotic Syndrome & HIV
May 8, 2012

Spring of 2011 I had to be hospitalized due to extreme swelling. Found out I had something called Minimal Change Disease. The nurse asked me to take an HIV test. I declined because my new insurance would not kick in until a month later (I am also 99.9% sure I'm HIV+). Started prednisone for a while then changed to Cytoxan - things are a bit better with the Cytoxan, Dapsone, Simvastatin, Lisinipril & Diuretic. The healthcare workers are strongly pushing me to get the HIV test due to my low lymphocytes among other things.

Fast word to now and I'm reading up on HIV meds & I worry about how well they will work with my kidney problems (i.e. high proteinuria). Is there any chance left for me?

-Male, 41, Scared & Lonely

Response from Dr. Young

Hello Scared and Lonely and thanks for posting.

Sorry to hear about your condition-- while I can appreciate your insurance issues, I'd really urge you to get the HIV test done, since HIV is one of the causes of kidney issues, including significant proteinuria.

As for HIV medications, yes, one of the most commonly used medications- tenofovir- is associated with kidney issues. If your positive, I'd certainly avoid using this medication. On the other hand most other HIV meds are not associated with kidney toxicity. It shouldn't be too much of an issue to construct a well tolerated regimen that avoids both tenofovir and excess kidney risks; indeed, current US treatment guidelines speak to the point that medications that are considered "alternate" for some people might be "preferred" for others (like those with kidney injury).

I hope that helps and wish you well (and a negative HIV test too). BY



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