About a month ago I got a positive test come back specifically for the anti-RNA polyermase III anti-body which is strongly associated with diffuse systematic scleroderma. My experience with my GP was honestly traumatic, he had obviously just received the piece of paper with my test results right before our appointment and just read them out, was audibly shocked over the phone, then said that he would call me back in a week (its been a month), and told me to RESEARCH IT. Like what the f*** is that even ethical..?. Seeing its a common experience on here though which is very disappointing.
I have had a various array of chronic health issues that have ranged from SIBO, chronic fatigue, and generally catching every virus that comes within one inch of my body. I struggle with muscle fatigue as well. I was getting tested generally for auto-immune diseases at the royal free in London and they just happened to test for scleroderma...
I have recently developed Raynaud's, about a month and a half before I received this test result. It happens when I get stressed too? And my fingertips just go numb sometimes. In addition I have been finding this weird white-ish bumps on my hands that have been also developing. Other than that I continue to have very crippling fatigue. I have an appointment with Dr. Howell and Dr. Ong at the Royal Free on the 12th of April.
My mental health has deteriorated greatly in the last month. I was not expecting to have that result. And I am waiting on this diagnosis just feeling so hopeless and depressed. My mental health has always been bad so this has been kind of a punch in the gut for me. Oh, also my GP told me "not to freak out", that it "could be a false positive" which may be true but I am just very upset and scared.
I have attached pictures of my hands and tests.
I am just wondering if anyone has any advice, similar experiences, or can recognize any similar symptoms in the pictures I have provided. Particularly with the specific anti-body test I had.
(edit it only lets me upload one picture? I can reply to my own post and post the rest..)
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tomcatgirl123
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Hi. First off I’m so sorry you were given this information by your GP and just left to figure out what it all means for yourself. That was not good practice but also to be fair Scleroderma is rare and he probably doesn’t know much about it at all. Once you have seen the consultant and get started on treatment for a Raynaud’s and, if you have it, Scleroderma - a lot will likely improve and you’ll be in very good hands. This uncertainty and wondering is just horrible. As most here know too.
Next thing - please remove the image and edit it as it gives out too much personal information eg your name and nhs details and it’s best not to share these - even here.
No one here can diagnose you as we aren’t clinicians and it’s quite blurry so you’re better off just leaving your positive antibody in your post or edit it to close up on antibody only. I have the antibody listed above yours but can’t spell it sorry. It’s diffuse too.
You definitely have Raynaud’s and yes, I too have late onset Raynaud’s and a diffuse antibody so I worry too. But so far mine is behaving more like Limited/ CREST and more in keeping with Sine Scleroderma. I’m guessing they will run it again when you’re seen to check it’s not false positive as they did for me several times. Mine isn’t false positive but it hasn’t caused more than Raynaud’s and severe gut issues yet so I am not clear cut diagnostically. Fingers v sore.
But things can change so it’s great that you’re able to attend Royal Free at least. 🧸😊
Oh noo! I did not even think about the personal information.. I dont know how to edit so I am just going to re-post. Thank you for your help and thoughtful message <3 great to not feel alone
Okay, edited! Phew. Can I ask, how long did it take you to get a diagnosis? And how fast were the onset of your symptoms? Mine seem to be happening very fast as I have never had Raynaud's before. One of my finger tips is just permanently numb.
Yes sure no problem happy to tel you more. I’m slower than you with diagnosis as they misdiagnosed Rheumatoid long time ago many years then Lupus then sjogrens then discharged saying not Scleroderma no antibodies apart from ANA just Raynaud’s and sjogrens offer no treatments I hadn’t tried already. Saw a dermatologist about red spots and she immediately thought MCTD so sent me to a different rheumatologist who ran same panel as yours and the one above yours showed positive first time. They took it again and again to check as previously had Th/ To as false positive but it was always high positive. I don’t have skin tightening nailfolds normal and my Raynaud’s mixed with severe neuropathy responds well to my vasodilation so doesn’t show as bad now although fingertips very red and sore and numb after ten years of this. Raynaud’s arrived after swollen painful fingers and they said this was Rheumatoid and post menopause. Tried nifedipine and others now hypertensive high dose and Iloprost work well for me. Like I say it’s the gut issues are severe for me the rest is more manageable. So eleven years to get diagnosed. No lung problems but did have early on so on hugest dose of Mycophenolate now still no skin tightening or nailfolds u can see.
Raynaud’s and neuropathy when red - called Erythromelalgia(spelt?) I think
Wow, that must have been so horrible to have years of getting different diagnosis over and over... I see that is unfortunately such a common experience for people with auto-immune diseases. Doctors seem to have a hard time pin-pointing what is wrong and I feel like that leads to a lot of psychological distress. It also kind of makes you think its all in your head which is even worse.What anti-body did you test positive for, if you don't mind me asking?
I am so sorry to hear about your gut issues. I can relate. I had SIBO for many years and also have ongoing severe acid reflux. its truly horrible and makes eating a bit miserable sometimes. Really feel for you.
Yes it’s hard. But I can remember the shock of sudden onset of mine 11 years ago. I’d never heard of or seen Raynaud’s until 2 of my fingers suddenly went pure white and numb one day ten years ago while I was washing up in cold water and I nearly passed out with fright! Id just been diagnosed and put on medication for Rheumatoid disease so my GP said it was secondary to that. In some ways it doesn’t matter about the label because the treatments are same or similar and I was treated belt and braces immediately - so taken seriously by my GP - who decided after a few years that I probably had Scleroderma. So relief to get antibody confirmed a few years ago and not such a shock for me as for you. Can’t spell my antibody but it’s the one direct above yours.
Awwww I’m glad I pointed out as important information and never know who is on these platforms looking for this kind of info. Sorry but best not share I feel - new-ish here myself so don’t know how you add or remove yet. And it’s v blurry as I was looking on it for my own antibody and could barely read it! We sound similar so it’s great to meet you and please keep talking it’s great to get support during this uncertain period of life. I’m two years in to diagnosis now and still getting my head around. Feet show more Raynaud’s white fingers tend to go dark red morexx
Very sorry to read the post from Tomcatgirl123, what an awful way to find out her diagnosis. I believe that GP’s
do know at least that SSc is a rare serious disease and as they say in Law ‘ignorance is no defence’. I just think there is no excuse for crass behaviour.
I noticed you mentioned that your nail folds are normal
as well. I keep being told that nailfolds are a diagnostic
criteria, I had one suspected giant loop on my first nailfold and now some architectural derangement on my second but it is not enough to be diagnostically relevant. I have long suspected that there must be cases of diagnosed SSc but with normal nailfolds as with negative bloods. Scleroderma doesn’t seem to follow the same course in everyone, so thank you again for this information which will also be passed on to my sceptical GP.
I agree not good for GP to hand over this information and just advise a patient to research for themselves is not acceptable in this case - although I had the same experience a few years ago and then got some further clarity when my rheumatologist’s letter arrived with blood test results a few weeks later.
And I have to say that personally I didn’t hold this against the GP because she had never heard of my antibody before and nor actually had my rheumatologist. So researching it for myself was very enlightening for both me and them. This can be what happens with very rare conditions and related signs. GPs are just generalist medics and gate keepers for referrals to specialists. But if yours won’t refer you on this is a worse problem you’re facing it seems. Can you see another?
I have long ago worked out that my nailfold capilliaries likely won’t show a connective tissue disease process because I have the opposite process to Raynaud’s disease going on in hands, feet and ears, nose. So this works like a very over the top vasodilator - which I showed in the photograph above: sruk.co.uk/scleroderma/eryt...
I don’t get the Raynaud’s in top digits of my fingers so this is likely how my nailfolds are unreliable and my rheumatologist agrees and has stopped being guided diagnostically by this very thankfully. Some are atypical as you say and need to work this stuff out and not get too hung up on diagnosis labels. But I’m treated belt & braces regardless so easy for me to say I know. Being treated asap is key and after years of bad fortune I’m a lucky scleroderma patient now 😊
Yes, doctors are arrogant. I received my diagnosis through an email from the specialist the GP referred me to and when I responded with WHAT? She told me to "google it". I do NOT trust any of them. Eventually, patients will stop treating doctors like gods and then maybe, hopefully, their arrogance will be tempered. "Not acceptable" behavior from doctors is the norm. If all I have to do is "google it", what exactly do I need a specialist/GP for? I can schedule my own tests, prescribe my meds, and take care of myself if all the info I need is on google. At least I read it and listen to my symptoms. The doctors do not. Just read some of these comments. It is depressing how people are treated by doctors. We wouldn't let a vet treat our dog the way we let doctors treat us. It is so discouraging.
Sorry to correct but I think the GP has referred them as they said this in their post “I have an appointment with Dr. Howell and Dr. Ong at the Royal Free on the 12th of April.”
12th April quite soon and Royal Free is the best place in time so I think the GP has done what they can maybe? - they probably have to look up as it’s quite a rare scleroderma antibody and not for a GP to research as would only find out same on Google anyway. Only a rheumatologist can run this specialist bloodwork to check it’s not false positive not a GP.
But I agree they should have been more professional and not sound “audibly shocked” as this is not what any of us need from our GPs.
Duh, I read the post and that doesn't mean the Rheumy will be good. Most have to go to several Rheumys to find a good one which was my point. Amazed you felt the need to post that.
It is NOT true that ONLY a Rheumy can run the blood work. In fact, most Rheumys I've been to insist that all the titres are run before seeing me by the PCP so that they will have results at the initial consultation. There is no law at a lab that a Dr. must be a specialist to run certain tests.
Please don't presume that everyone here lives in the UK.
I’m sorry I really didn’t mean to offend you as I’m new to this forum. I admit that I did kind of assume most people here are from U.K. because it’s hosted by a U.K. charity?
I just feel a bit sorry for GPs sometimes and I’m just not sure what we expect from them with rare diseases - although I did agree that sounding “audibly shocked” was not good or professional at all.
But here in U.K GPs are just gatekeepers expected to know a little about a lot and these are not ANA but are very specific rare antibodies for a rare autoimmune disease. Here April is a very quick referral for rheumatology so obvious that the OP is being taken very seriously by the Royal Free hospital I would say. Very hard waiting though always especially after researching the antibody. I did this myself too and was scared but reassured now that not rapid onset diffuse for me although gut has rapidly deteriorated.
I usually posted on US groups until I discovered this one where it’s other way around so I am used to explaining what I mean for American members with very different healthcare system. I read profile and you’re from States?
But cos SRU.K. I guess I thought it would be other way round.
Sorry if we crossed wires but was not intended I was brisk as I am in bed unwell today.
In U.K a GP can only order basic blood work such as CBC, renal, LFTs and U&Es plus ANA and RF.
Mine can’t even check my CRP or ESR now as not allowed - it’s all coded and from different NHS funding pots so they say my rheumatologist must do this not them. Also not usually the same GP we speak to so often they don’t even know us or our medical history and always rush rush as so many patients to get through so 15 mins max. I have seen many rheumatologists because they retire or move on - would love to be able to attend the Royal Free but too far for me. No choice here unless go private.
I’m sure I gathered that the Royal Feee are the best in U.K. for Scleroderma? So sounds very hopeful that rheumatolgists should be good although not heard of these consultants - but that means nothing as I’m not attending - maybe others here have.
I think you are being a bit aggressive but perhaps I sounded aggressive first to you? I’m truly sorry if I did it wasn’t my intention.
Yes, doctors are arrogant. I received my diagnosis through an email from the specialist the GP referred me to and when I responded with WHAT? She told me to "google it". I do NOT trust any of them. Eventually, patients will stop treating doctors like gods and then maybe, hopefully, their arrogance will be tempered. "Not acceptable" behavior from doctors is the norm. If all I have to do is "google it", what exactly do I need a specialist/GP for? I can schedule my own tests, prescribe my meds, and take care of myself if all the info I need is on google. At least I read it and listen to my symptoms. The doctors do not. Just read some of these comments. It is depressing how people are treated by doctors. We wouldn't let a vet treat our dog the way we let doctors treat us. It is so discouraging.
I have the same antibody diagnosed a year ago. I saw Dr Ong, I was told I do not have Scleroderma although I think that may change. I recently have shown more signs of raynauds and other symptoms since Covid vaccination. Please let me know how you get on or contact me to chat. Is your ANA positive
This was exactly my experience with Dr Ong and the team at Royal Free Scleroderma clinic. Granted, this was done in the height of the pandemic in April 2020.
My history is as follows and I hope it helps someone as the symptoms and how progressive it is, is so different in many people. Jan 2020: first signs of Raynaud - little finger going white. Raynauds Quickly progressed to multiple fingers. I started taking pictures of the changes and recommend doing so to show the professionals. To be fair, my GP was brilliant and ordered a series of blood tests. I am under Islington Medical Centre.
Results received in April 2020 - SCL70 positive. Referred to Royal Free.
May 2020: Referral to Scleroderma clinic and initially saw Dr Ong via video consultation. Also had a a further appointment with one of his other colleagues (female) and remember being reasurred that there was "absolutely no way!!! I could have Scleroderma." and was discharged. No nailfold capillloscopy, nothing more than a telephone / video call. My cuticles show extreme visible nailfolds and this has progressed over the years to every finger on both hands.
Fast forward 2 years to 1st April 2022. I've had very progressive Raynauds. My fingers are constantly blue. I use hand warmers, wool/cashmere socks and use heated foot insoles. I decided to use my private healthcare and saw a rheumatologist at The London Clinic who also specialised in rare CTD - Dr Mittal. Bloods complete, along with echo cardio gram. I am still SCL 70 and thankfully, echo saw no involvement. We're due our first baby in June 2022, so lung tests will be done once baby is born.
Diagnosed early scleroderma (diffuse cutaneous systemic sclerosis) and the next steps are: referral to Dr Chris Denton (at Royal Free) and nailfolds - private. Then, lung tests once baby is born and then subsequent monitoring annually to understand the level of organ involvement. Treatment to commence once baby is born. I now also have some tightening on the face (near chin) and on my right hand.
It's been a very long road and thankfully don't have reflux or other issues. The nailfolds and progressive raynauds and very very recent skin tightening was definitely cause for concern. I will keep taking pictures and charting my journey, so I an reference these when I see the specialists. Important to document these so there's an accurate record of progress.
Hey - yah I definitely will let you know. I have the appointment next week. Did you have further tests etc ? What determined you not having it? Did you just not have any symptoms?And I have no idea if my ANA is positive I was just given a test result saying that that antibody was positive
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