Our Lupus Histories, Kidney Failure, Dialysis and/or transplant

Another member asked me about my lupus history, kidney failure and transplant. I’m putting my response here so we hopefully can start a resource for people to stumble on via Google. Please feel free to contribute.

First a long background: I’m a lucky person who has been in remission for years, so I’m also interested in why some people with Lupus are not able to make it into remission but don’t have anyone to talk to about it. I had bad lupus with all the skin lesions, bubbles, wolf rash, etc. when in early high school grade 9 or 10 probably 1990. We were in a remote small town in Alaska of about 3,000 people. The first doctor an old man was misdiagnosing it and no progress was being made. Luckily because it was a small town and people could see I was not doing well others including an English teacher recommended and talked to my parents about going to the other younger doctor who had a son in my class (of 42 students). Because of that I was diagnosed in say six months. I was put on 60 – 80 milligrams of Prednisone – maybe more and was swollen and not getting noticeable better. They could see that my kidneys were being damaged, so we were going to fly to anchorage for a biopsy, the night before that trip I had Lupus related seizures and was medivacked to Seattle’s Children’s Hospital. That was a good event because it got me directly under specialist care. From that point forward the main effort to treat the lupus was Cytoxan. I believe I continued lower doses of Prednisone but throughout college I was on Cytoxan. When in college I went to new rheumatologist and I feel like my previous treatments were just continued until at some point maybe 1996 a new rheumatologist said he didn’t think it was still needed and stopped it. At some point Plaquenil was added as it was a new wonder drug for lupus. I don’t remember if that replaced or supplemented the Prednisone. After college down here in the Washington DC area I saw a new rheumatologist and he felt that I was in remission and tapered me off the Plaquenil and Prednisone if that still existed. So, from ~1999 – 2007 I was on no drugs. Since those early days at Children’s Hospital, we were told that my kidneys were scarred from the lupus damage and it would be a concern at some point – I’m sure they told us the risk of kidney failure, but I was not thinking about it. I lost touch with that rheumatologist soon after when the office closed and was not under rheumatologist care, but my primary doctor would do tests yearly. In 2007 I was not feeling right at work and did a blood pressure check at a nearby pharmacy and my blood pressure was very high, took the train home so my wife could take me to the hospital and at that time learned my kidney damage was causing high blood pressure, which in turn probably was damaging the kidneys more. It the hospital I found a good nephrologist who got my blood pressure under control and started teaching me about what was going to happen as my kidneys failed. After 2007 I found a new rheumatologist but that was still basically just a check-in this was so if I had issues I would have a rheumatologist - but over time I stopped going as the nephrologist really took care of everything in my monthly or quarterly appointments. One of the last things the rheumatologist told me is the transplants are great for lupus patents as all the transplant drugs should help keep the lupus activity down. I was prepared in 2013 when it was time for dialysis with a fistula, already having been listed for two transplant years and having received a transplant call the month before it was time for dialysis. Because of that transplant call I didn’t seriously consider home hemo, or doing my own needles, if dialysis comes up again, I will at least do my own needles. My good nephrologist left the practice well I was under transplant center care, so I moved to the transplant nephrologist’s private practice associated with the hospital. I’ve not consulted with a rheumatologist since I left the hospital but know that my nephrologist will refer me to a good one under the hospital associated practices if needed. I’ve gone to other specialists like the dermatologist, the ear nose and throat guy who did the parathyroid surgery etc.… When I had antibodies in the blood, but negative lupus tests, my nephrologist put me back on Plaquenil to be safe, and I’m still on 5 mg of Prednisone for safety as well. The risks from those two are glaucoma which is treatable if caught in time, so yearly vision tests for that, skipped last year, and bone decay. There are also risks from the transplant medicines which we don’t really hear a lot about.

I’ve not had a flare up since my lupus was high school.

Second – I wonder about why some other SLE patients do not achieve remission – is it they don’t get the heavy treatments like Cytoxan – did I receive that because I was young and stable? (As you can probably gather in most of the things, I share I’m compliant but more beneficial to myself I respond well to treatments and don’t have a lot of problems from treatments, not other medical issues that compound things.) I found this link for Cytoxan well I was checking the spelling https://www.verywellhealth.com/about-cytoxan-2249864 and noticed at the bottom An Alternative You Should Know About A less toxic drug called mycophenolic acid has been shown to significantly reduce steroid dosage for patients with lupus nephritis or treatment-resistant lupus. It's considered first-line therapy for lupus nephritis and can often replace Cytoxan. Mycophenolic acid is one of the two anti-rejection medicines I’m on.

I do read comments on the Facebook group from others who should like the lupus is a major ongoing problem so maybe some people don’t reach remission even with treatment. A friend of my wife retired early due to her Lupus, but I’ve not talked to her.

So, the above doesn’t directly address your questions. But it should give you something to consider. I’m happy to answer any questions/thoughts this brings up. It does sound like you don’t have doctors who really know Lupus which sounds bad. Do you have the option to use telemedicine to consult with specialists somewhere else, or even try to find a doctor locally who would have clients who fit the typical lupus patent and might now more about it? Here the US misdiagnosis causes the most damage from lupus because doctors are treating the wrong diseases.