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.
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Hi. I read some of the replies you received on the Lupus U.K. community and looked to check you’d posted here too. Did you get any news? If so I really hope it was good?
I’ve found you will always get more replies on the Lupus U.K. because many more have lupus than Scleroderma. But I read someone’s comment that Lupus would be saddest outcome and didn’t like to comment there as they lost someone close to Lupus nephritis. However as someone who has had quite a few of these autoimmune diseases diagnosed over the decades - I am now always showing a rare diffuse autoantibody very similar to Scl-70. I have no other antibodies ever now although I did briefly have Th+To which is for limited but it was only weak and thrj this other on same panel showed up strong. I’m hoping that I’m in the minority with limited but it’s looking like SSc is the one that’s progressing quite fast as my face now has the look according to my dermatologist 🥺
My gut is rapidly failing and my antibody puts likely outcome as poor - especially in first ten years of it showing.
Main severe risk for me is to heart, lungs, muscles and GI. A lot depends on scleroderma antibody for likely outcome. Personally I’d rather have any other than SSc as it’s rarer, there is less research and less effective treatment options. Obviously in ideal world we wouldn’t have any of these but I think you’re right to feel the way you do from perspective of someone who has been ?diagnosed with most of these at some point over a lifetime.
I did also really want to say that non AI renal diseases can apparently cause a false positive ANA. I read this once and asked my old consultant some years ago and he confirmed. Not necessarily better outcome with things such as cancer or CKD- but always better to know what we are dealing with and have a good range of treatment options at least.
However there are also fair percentage of those who survive with scleroderma to a good old age with what would have been a normal mortality risk. So I’m resolved to accept that I have this and live my life as productively as possible. My husband and young adult children choose not to read or digest anything much about my condition and I also think that’s a good thing for me as I need their teasing optimism to keep me emotionally on the rails xx
Yes, I posted on both. I posted here first but it didn't seem like anyone was going to reply. I chose the Lupus forum because I read that sometimes, using the multiplex test, it will incorrectly read as a positive for the SCL-70 but actually be Lupus. Oddly enough, his old doctor tested him, two years in a row for the Anti Nuclear Antibody test and they both showed negative. I am not sure what the difference between those test and the one his new Nepean though as the run she was was called just ANA antibody test. I am guessing they are the same with just different wording but could be wrong.
Before this bloodwork came back, at his first appointment, his doctor alluded to a possibility of IGA which is Autoimmune. So we aren't sure what to think.
Today, he's doing a 24 hour urine test to measure for all sorts of things such as protein and Creatitine.
We are waiting for the Vascular Surgeon to call us to schedule an appointment for a kidney biopsy. His doctor said she won't know for sure until that comes back.
So, who knows at this point. I haven't asked his doctor about the ANA test because I figured that she is waiting for his 24 hour urine as well as his biopsy results before she confirms anything.
Your reply was very helpful. It's crazy that there are so many Autoimmune diseases out there, even ones they haven't discovered yet. My husband just turned 40 so we are trying to be as optimistic as possible, hoping that whatever comes back, we caught it early enough to be helpful.
I forgot to mention, thank you for your feedback in regards to lupus vs SSC. I just figured there's more research and development in regards to lupus currently.
Oh and, yes, it definitely helps to have optimistic family and friends rooting for you. At the end of the day, we just got to keep on living our daily lives and try to enjoy each and every moment.
I think you’re doing valiantly under the circumstances. I’m a researcher by work and nature so I know I’d be same as you if my husband was in same boat.
I think the rheumatologist is probably checking same ANA and ENA antibody panels different lab profiles because some patterns are more reliably tested using one autoantibody immunology lab profile than another. It all depends on the pattern associated with a person’s ANA I think.
The good news is that they are being so thorough. I think this is the case now because immunology research has advanced so far since the arrival of Covid. My first rheumatologist was only interested in RA really and no one even ran my ANA profile or looked at a broader range than Rheumatoid Factor and anti CCP when I first got really sick. And of course I was clueless back then - just about had internet but not a googler back then so just looked up RA and flipped when I saw pictures of very deformed hands.
What I later learned is that these hands belonged to very old stock images of rheumatoid sufferers who had been left untreated - should have known from the liver spots. Basically things have moved on massively with RA and Lupus apace. It’s very rare for anyone to die of either now.
I’m not sure if this is because SSc is a fundamentally worse disease as it’s very heterogeneous so outcomes vary hugely.
I knew an old chap in my home town who lived with it well into his 80s having been diagnosed in his 40s. He eventually died from pneumonia about 7 years ago and right up until about 4-6 months prior he was still walking round the town in wrap round dark glasses (Sjogren’s?) and thick coat and gloves all year around. Also a GP told me earlier this year that her American cousin had suffered it for decades and was still going to the gym in his 80s. Made me feel like a wimp!
But I also wonder now what SSc antibody they carried and what type they had. Same goes for all these autoimmune diseases. Some with MS have a relatively mild relapse remit type whereas others have the late onset aggressive type. Same applies to SSc and renal involvement now might well not mean that this progresses. The main thing is to be correctly diagnosed and then appropriately treated 😊
His ANA test seems generalized to me because it doesn't show his numbers. Just a simple Positive or Negative. Maybe, once his 24 hour urine test comes back, she will run a more extensive antibody test.
We (my husband and I) are new to this, at least the autoimmune part of things. Could you please elaborate on the Renal involvement now theory?
I seen a post in the lupus form of a person's facial rash. My husband developed red skin on his face about 10 years ago, similar look to someone who drinks but my husband doesn't drink at all. We chalked it up to roseacia and since he's a guy, he wasn't worried about how it looked. Also, if he stands for long periods, his feet turn a blueish tone. Those are the only things we've noticed since learning about autoimmune diseases. Oh and he's stiff in the mornings. He always said he felt as if he's aging faster than what he's supposed to. But his grandmother aged quickly as well, even though she lived a long life to 91. I first met her when she was just 70 and she looked 15 years older. Her skin was rough and she had more wrinkles than what was typical. I just figured it was from being in the garden when she was younger and not moisturizing. Oh and she had trouble passing stool so but laughed it off and took over the counter medication for that. And his mother is 61. She has trouble swallowing large bites of food. She was told her throat is the size of a pencil. When she asked why, she was told it could have been caused by childhood trauma because something about her spin isn't right. (She was abused for a short time in her early childhood. )
Anyway, I may be reaching here but those things are standing out to me now that I am learning a bit about this disease.
Thanks for your feedback. It's nice to connect with someone else who has dealt with this.
You’re both at most difficult stage because it’s understandable that you have all these questions. But I really can’t answer as everyone is different with autoimmune diseases. It’s not like a cancer pathway or heart or diabetes where doctors are usually very familiar with the type and most likely outcomes.
Nothing is cut and dry in rheumatology.
The most positive thing to me about systemic sclerosis is that it tends to leave the brain alone at least. But there are so many worst and best case scenarios for all types of organ involvement that I wouldn’t want to say more about renal. I have been at stage 2-3 CKD - relating to when my hypertension and Raynaud’s went untreated for a period of time. My renal bloods are stable now at always greater than 60. But scleroderma renal crisis is the main risk and wouldn’t be a slow drop like you describe I suspect. Crisis is as crisis says in the label.
Facial rashes could be anything - rosacea most commonly - especially in men. The lupus rash, which my mum had with hindsight, skips the nasal folds and looks more butterfly- like but is something even clinicians often struggle to differentiate between, let alone either of us.
Lung and heart involvement are serious associations with SSc but he would need regular tests for these.
All I can advise is that you try to cope with this period of uncertainty by doing as much enjoyable stuff together as possible and distracting yourself until you have more news. It sounds to me like your husband is in very good hands clinically speaking and it’s great you’ve got his back.
If you want to learn more once you have more information from the rheumatologist then the scleroderma community in America is obviously much bigger and the Inspire forum is worth joining and asking more questions on because it’s pretty active I think.
But I should say that on any health forum for specific conditions there will be people who think that their condition is the worst one and who only focus on the seriousness and awfulness of their own condition.
People who span conditions know this is not actually the case and that it’s impossible to live a life if you become completely bound up in worst and best case scenarios attached to one disease. You could worry yourself silly only to get run over by a bus.
It’s a family of diseases with autoimmune and no one should say Lupus is the worse or RA or Scleroderma or Vasculitis. They all overlap and all suck!
Your husband’s condition will be his own unique one and how he manages it, once it’s diagnosed and treated, will depend much on positive outlook, early treatment and the best possible lifestyle decisions - including seizing the day wherever possible. So please keep being informed and strong but try not to Google too much or steep yourself negative scenarios which may never even happen.
You have no idea how much your reply helped! This past Summer, we got into hiking and went to a couple of National Parks together. My husband has really come out of his shell (he's an introverted person) who has pushed my out of my comfort zone (I have anxiety) in order to start enjoying life and experiences together. Sometimes, I wonder if I worry more than he does. He tells me all the time that he's come to terms with it but at the same time, he's doing everything in his power to help his body. So hes accepting reality without giving up. His new Nephrologist put him on 2000 mg or less per day of sodium and he's taking it so seriously, he's tracking it daily and sticking to it like a pro! I am also going lower sodium with him as I found out the American Heart Association recommends lower sodium for everyone.
And you are exactly right. We could all be diagnosed with something then get hit by a bus. Great example. 👍
I am learning, as we are getting older, that we aren't the only ones who are going through health stuff. After opening up to our friends and co-workers, a few have high blood pressure, some are diabetic and my 43 year old friend just had her first heart attack 2 weeks ago. If anything, this should tell us to live life to the fullest while also trying our best to care for our bodies.
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