Hi i'm wondering if anyone with knowledge of these tbings could possibly answer my question. I recently tested positive after months of strange symptoms with both anti centamore and sc170 antibodies. Basically both limited and diffuse forms of sceloderma.I asked two different rheumatologists and my GP what exactly that might and they all seemed unsure, that possibly there be false negatives and that the likelihood of having both is extremely rare. I also read a few medical articles that seemed to suggest that it is indeed a very rare occurrence and that it is more likely to mean the Sc1 70 one is a false positive.
Has anyone any idea about this, or experienced this themselves?
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Lucyscure
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only that I tested positive for scl70 in November 2021. Once saw the specialist rheumatologist they redid the tests and scl70 was negative in April 2022. They redid again in November 2022 and negative again.
I’m still being treated for diffuse though as symptoms fit and not everyone has scl70
That's good that you have a diagnosis so early on. It does seem that receiving both good treatments and early interventions are the keys to managing Systemic Sclerosis.
hi - I know this post is from 3 months ago but been trawling older posts to try and find someone from my location who posted or replied to query about Royal Free from Scotland after similar local story to mine. Took a trip to Prof Denton for them to get diagnosed having been fobbed off by same local team as mine.
Anyway no joy finding their posts so far but read this and thought I’d say that I seem to have similar issue with two scleroderma antibodies - only mine are both rare. One consistently high positive is called U3 RNP/ Fibrillarin and points more to diffuse with similar outlook to scl70. The other is a fluctuating weak positive anti Th/To which is specific to limited. When it first showed up the scleroderma dr said it was likely a false positive because my +ANA has come down to a weak positive too and is nucleolar pattern associated with both SSc antibodies. But now my rheumatologist is a bit baffled as I have no antibodies of other CTDs. I have symptoms of or Sjögren’s - which I am diagnosed with by biopsy and long history of Hashimoto’s.
I suspect I have limited as part of overlap CTD but my rheumatologist was pleased when I suggested that I travel to see Prof Denton at Royal Free to discuss booked for early July . Apparently I have the local immunologists baffled and they pester my rheumatologist to see if I have symptoms of systemic sclerosis yet. I don’t in my skin or nailfolds, bar the red spots. But I do have severe in my GI as confirmed by motility tests from top to tail and I have bad Raynaud’s. I’m on 3g CellCept/ MMF and Iloprost infusions plus loads of GI meds and a liquid low fodmap diet - antibiotics for SIBO.
Hi OldTed60, it would seem that your reply is quite synchronistic in regards to my situation at the present time. I do recall you mentioning that you had a difficult time getting a specific diagnosis due to the overlapping and changing nature of your antibodies. Please correct me if i am wrong but was your diagnosis leaning towards sine? I'm glad that you're going to see professor Denton as it would seem.the other rheumatologists/ specialists are baffled by the progression of both your changing antibody profile and your symptoms.
Recently i was referred to a scleroderma specialist who performed a nailfold capillaroscopy test and examined my skin and they seemed to think that according to these findings that i do not have sceloderma even though i have specific antibodies. I do have GI issues albeit nowhere as near servere as what you suffer. It seems this whole process is rather frustrating and i'm at a loss as to how to proceed. Any advice on what i can do going forward would be most appreciated as i have very similar symptoms to yours.
Hi Lucyscure. It seems we are both conundrum patients for similar reasons - although I am diagnosed with Overlap Syndrome and have been for some time. And two consultants - one a Sjögren’s rheumatologist I have seen annually, the other my dermatologist - have both specified that I have scleroderma - due to some red spots of telengecstasia, Raynaud’s and GI and now some furrowing around my lips. So it’s the nailfold capillary thing that is stopping the local SSc specialists from diagnosing. My local rheumatologist can’t diagnose scleroderma without their SSc colleague’s agreement.
The changing immunology isn’t really changing much for me now. The more diffuse one has been consistently high titre for over 3 years but the limited one comes and goes and is equivocal. Tests 4 weeks ago showed the Fibrillarin one was slightly down in titre (still high at 75 - range 0-10) from 6 months ago and no Th/To this time. So the limited one is ??? But the diffuse one is always strongly positive and not a false positive either. But the cohort of patients carrying it is too small for this to necessarily be diagnostic of itself I’m told. Occasionally it’s been found in Lupus and UCTD and even one primary Raynaud’s patient - although these were isolated cases as 96% who carry it do have full blown SSc and often Myositis/ PM too.
What I would say is that if your GI problems are anything like mine - then a good gastroenterologist is key to getting clarity. Motility testing has been very important for me. It hasn’t brought me a specific diagnosis as Sjögren’s can cause quite severe neuro GI issues too due to autonomic dysfunction/ POTS which it’s strongly associated with. But mine doesn’t seem to be this as autonomic testing has always shown negative for me. To be honest I’m not sure that Sjögren’s really would cause such severe GI throughout as mine and I guess this is what most of my doctors are privately thinking now. They all seem aware of Sine but no one can quite bring themselves to say it because it’s not part of the SSc diagnostic criteria.
Gastric emptying scan showed severe gastroparesis a few years ago and colon transit study showed same. Also I have silent reflux and hiatus hernia plus gastritis and polyps and prolapse. So none of this is classed as functional now it’s been definitively confirmed.
But getting all your individual problems identified through tests as I’ve done will surely help you manage them better and may well aid your rheumatologist in identifying the bigger problem. If you can get a referral to a gastroenterologist then this might be the way to move forward for you? For me this has at least been validating and whatever CTD my rheumatologist chooses to call it - treatments are the same
Hi OldTed60, thank you for your very prompt and detailed response. It would certainly seem we are both a medical conundrum to those that treat us in the medical field. IF only we could be seen by Dr House he would have us both diagnosed and well on the way to recovery in a matter of hours!
I find it interesting that it was the Sjogrens rheumatologist and the dermatologist who specified that you have scleroderma, yet, please correct if i'm wrong it wasn't the actual scleroderma specialist? If the Ssc specialist was in agreement with the local rheumatologist would it make a big difference to treatments that you currently receive?
Unfortunately yes the nailfold capillaroscopy test results seems to be the deciding factor on whether you have sclero or not!
The changing immunology does seem to be a recurrent theme in some people's antibody profile. My recent blood tests showed that my Scl-70 is going down and the Anticentromere one is going up. Hopefully professor Denton will be able shed some light on your particular presentation of autoantibodies and the subsequent symptoms that ensure. As it would seem they are so rare that it's beyond the knowledge of the local rheumatologists to decipher.
I'm so sorry to hear you are dealing with such debilitating GI symptoms, I had gastritis years ago and i know how painful that can be.
Thank you for your suggestion of getting a referral to a good gastroenterologist, as it may lead to a better overall understanding of what is actually occurring in my body. As you say it's really not the terminology that counts it's how they treat/ manage the symptoms that's important.
sorry - I should have explained better - my local rheumatologist is a Lupus specialist who works in general rheumatology. They are amazing but don’t see the scleroderma or Myositis patients in my area as these patients attend the separate CTD clinic - where the capilleroscopies are done. And due to normal capillaries I was about to be discharged by the scleroderma clinic so I travelled far to see this Sjögren’s expert - who also sees scleroderma patients and knows Prof Denton. She rediagnosed me with limited SSc overlap syndrome, regardless of normal nailfold. She said some just don’t tick boxes but still have it. Then - when I returned home my dermatologist took her lead from this far away Sjögren’s (and SSc) rheumatologist and decided to refer me for a second opinion internally from my present consultant. My present rheumatology consultant is happy to work with these English experts for patients like me where the scleroderma specialists weren’t. So I’m seeing Prof Denton with her blessing and I hope she’s happy to keep me whatever the outcome of this one-off overview on my antibodies.
Lol about Dr House - I’m guessing he would take the expedient view for the sake of good tv and to keep viewers switched on. No one likes medical mysteries that can’t be solved in a pretty timely manner!?
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