ANA antibody test positive... Lupus or Systemic scleroderma

[Bananas2007]

Hello everyone! I am based in the US but it's nice to be able to connect with people from all over who have this condition. For the past 3 years, my husband has been spilling protein in his urine. (He noticed it and mentioned it to his doctor at his annual physical and his doctor ordered a routine urinalysis). The protein has never went away and his gfr was slowly degrading.

He went to a Nephrologist with no answers and we were both frustrated. So I got on Google and found a doctor who specializes in glomerular diseases as well as rheumatology. We got a referral from his Primary Care doctor and made the 2 hour trip yesterday.

She seems to think there's a possibility it's something autoimmune related. He got some bloodwork done just yesterday that she rushed. The results were in while we were still driving on the road.

I will get to the good news first. His gfr went up to an 83! His last 3 tests in a row were in the low 60's and he was headed for stage 3 CKD. His blood creatine and bun were great! He still has to get a kidney biopsy as his new Nephrologist thinks it may give us answers.

Now to the not so good news. She tested him for antibodies, an ANA multiplex with reflex test and it came back positive. She also did another test go see which antibodies he has. The test is called Auto Immune ABS, multiplex. The only antibody that came back positive on that test was the Scl70 antibody.

I am not looking for a confirmation of diagnosis here but does anyone know of the accuracy of this test? I read that the multiplex can sometimes come back incorrectly. Either its a false positive or its actually for Lupus?

After reading on some of the symptoms, my husband does have a few of them but physically, they are mild. For example, he has shiny skin on his hands and his ankles but his skin doesn't look bad, if that makes sense. He also has a bad back and his chiropractor says he's incredibly stiff for being 40. Are these signs? Oh and he had acid reflex a year or so ago but that runs in his family. If he eats too fast, he burps really bad and gets phelgm.

Also, is this something that is typically passed down in families? This is going to sound crazy but I was more depressed over this result versus if it came back with Lupus. I know, that's crazy but I hear of new lupus treatments all of the time and I know a few people who have it and they seem to live relatively normal lives other than their flare-ups from time to time. (Of course, I don't want him to have anything but I know that something is going on.)

Lastly, I think it's odd that his kidneys are seemingly to "straighten themselves out". I am so incredibly happy about that but is that another indicator of something autoimmune going on here?

Oh and looking back, if this does run in families, his grandmother had very rough skin but we always chalked that up to her age. She lived until 91.

I am sure that we will hear answers later today from the doctor. We'll, maybe not answers but at least feedback from her. We are waiting on one more test result, tuberculosis I think. (He was vaccinated as a child so I am confident it will be Negative. )

Sorry for rambling and thanks in advance for taking the time to read my post.

[GottaAsk]

I hope the very best for you! It’s always such a confusing and long road. The sl70 is scleroderma specific but it can also pop on Lupus! They’ll need to check all the symptoms and align with all the tests. I for instance have no Lupus specific antibodies but I do for thyroid, Rheumatoid (AntiCCP) and a couple others including Crest with centromere B. But I am DX with Lupus. Here you can read about this here. Just let the rheum do their job as they’ll know best and try not to research further until they inform you what’s going on!!! It’s so hard I know.

pubmed.ncbi.nlm.nih.gov/112...

[Bananas2007 in reply to GottaAsk]

Thank you for the advice. I hear the multiplex test can sometimes be inaccurate so I will let his doctor and team do their investigation. His doctor seems like she's in a hurry to figure it all out which is a plus.

Oddly enough, he had two previous generalized anti nuclear antibody test, two years in a row and they were both negative. It's been sending his previous doctors on a wild goose chase. Maybe it's possible that whatever autoimmune issue he has, it's mild? 🤞

[DebbieJ6894]

I wouldn't be sad if he doesn't have lupus - it's a horrible disease. while sufferers can have it mildly it's usually found in women and if in men it's usually worse. My son died at 32 from lupus.

[MrsMarigold in reply to DebbieJ6894]

I’m so very sorry DebbieJ. Losing a child no matter what age is a suffering that truly defines you and your journey forward. Lupus is a terrible disease and I am sorry your son lost his life at such a young age. My nephew was just 26 when he died of a very rare cancer. He lasted only 5 months. He is my brothers eldest; me a loving Aunt. We never forget. God Bless you.

[Bananas2007 in reply to DebbieJ6894]

My condolences for your loss.

[GottaAsk in reply to DebbieJ6894]

I am a male with it and it all started over the last year (age 36) and already liver and gastro is being affected now. So the doctor moved fast with meds now. 😓 I am so sorry to hear about your son. My heart is with you.

[jilk]

you seem to be going though a lot at the moment, i would like to give you a sense of hope . Have you googled things like "lupus success stories," " kidney success stories," the answers for you may not be there but may offer a glimmer of excitement that things could improve.