Male Living with Lupus

My health issues began around 1990.

Doctor didn't believe me

Migraines sent me to a doctor first, then I would return to him as other things would start giving me troubles.

After doing this for a while ... and him never finding anything wrong, he began to label me a hypochondriac.

But I knew something was wrong and just kept bugging him (luckily I had good insurance at the time). Even after a hospital stay for a PE and then another stay for DVT Phlebitis he just thought I had “bad luck”.

He didn’t realize what was wrong with me until it finally became obvious.

Diagnosed with lupus

In 1995 my blood pressure soared, 220/180, I started retaining all water...not urinating, and he diagnosed me with lupus Nephritis IV.

I had never heard of lupus and my only knowledge of lupus came from buying a copy of The Lupus Book, by Dr. Wallace ... and it didn’t exactly reassure me that this would work out well.

I did a 24hr urine, had a kidney biopsy and started chemo all within a month of diagnosis.

It was a scary time for me. I was relying my doctors and I didn’t have the internet for information, had never met another person with lupus and knew very little of the disease.

How I manage lupus today

Good news is the chemo worked ... I received Cytoxan once a month for 6 months and then every three months.

Nephritis has returned and it was caught earlier. Got Cytoxan again but not as much.

In the years since I have had many ups and downs, but have learned a lot about lupus and what I need to deal with it, learn to live with it. Most recently seizures became my latest problem (even after over 25 years something new can still pop up🙄).

Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?