Has anyone here had an initial diagnosis of RA and then it was changed to scleroderma? I currently have RA as my diagnosis but as time goes on and I continue to do research, I wonder if what I have is scleroderma. I am sero negative and Enbrel has helped tremendously, but just not sure if RA is it.
Any experience or knowledge of this would be helpful. Thank you.
Hi shareasmile. I'm in the same boat only minus the enbrel or the RA symptoms now.
From what I've read and from what my last rheumy told me, Scleroderma is the one he couldn't rule out for me as well as RA because it can develop slowly. I have many CREST symptoms including tight sore skin on mouth and hands, Raynauds, blood in pee, borderline hypertension and borderline Athlerosclerosis and widespread parasthesia, nosebleeds, telangiectasias with some arthritis. And I have tiny calcium deposits and one very large irregular kidney cyst. However none of it is showing up as conclusive for one disease - all quite common in themselves apart from the parasthesia in mouth.
My autoantibodies don't yet support Scleroderma. I'm told it's a case of wait and observe. Many of these are common symptoms so unless it shows up as severe I don't think I'll be rediagnosed with it. And obviously I don't want it!
Unlike RA it doesn't appear to be a disease they try and catch and treat early but I think it's quite a recognised overlap with RA. I'm hoping if I have it then I only have mild versions of both perhaps. I will look out to see how you are getting on.
My RA never met the criteria for Enbrel so am just off steroids and not taking anything just now apart from a BP med and thyroxine. I couldn't tolerate four DMARDs . Twitchy x
Twitchy, you certainly seem to have more symptoms than I do. I have had a positive ANA and I have no hair on my arms or legs. My most recent event was little red, painful bumps on my fingers and my nose that have now become pitted. Just before that I had random bruising on my pinky, my tongue (so strange) and my thigh. All weird stuff, but do you think I could get an appointment with my rheumatologist to discuss it? Not! We are left to investigate and research on our own, it seems. I just want answers. These autoimmune diseases are so wishy washy and confusing.
I hope you get answers soon.
Thanks for your reply. =)
I am also seri negative, and I was diagnosed with scleroderma morphia when I was around 13/14 years old. My mother was diagnosed with scleroderma also as a child, and also has r.a
I have associated the link all along, also have thyroid problem, which also feel that is linked
Maybe it's the same for me as you and I actually have mild scleroderma along with RA. Ugh! I wish I could at least discuss this with my doctor before January, but they are hell bent on not allowing any extra appointments!
Blackett01 - I'm hypothyroid too. Is your Scleroderma Morphia limited to your skin or does it affect your organs as well? I don't have the morphia apart from one deep line running down from my forehead into my nose/ left eye. I'm a bit baffled by this line as its asymmetrical and deep - but have assumed it's just down to ageing with me because I'm nearly 53. Sorry to quiz you here but I don't feel I belong to the Raynauds and Scleroderma community properly yet, having no official diagnosis. I don't want to be a person who finds a disease and then makes the symptoms fit. So I tend to ignore lines and bumps and mild Raynauds and just focus on internal stuff, blood tests, ultrasound and endoscopy results etc. The tight mouth/ nose issues are most bothersome for me though and no one seems to have a clue what this is about. GPs shrug and suggest Sjogrens or burning mouth syndrome, dentists and oral surgeons say it's neurological and rheumy has no ideas so far. So I'm left with researching and trying to solve it by myself.
I was told by my last rheumy that even if I do have scleroderma they wouldn't treat it with ummunesupprrssants at this stage. Not sure why but as I've failed to tolerate four DMARDs to date I suppose he was simply saying that this disease wouldn't be helped by taking anti tnfs or Biologic therapies? I know people take Mycophenolate Mofotil as one of the main treatments for Scleroderma but I can see your rheumy wouldn't think it urgent to see you for this unless your organs were becoming involved.
I've never had much body hair to begin with and have always bruised at the drop of a hat but the bruised tongue thing sounds weird? I think I'd be more concerned to see rheumy sooner to make sure these thing aren't reactions to Enbrel perhaps?
Mine sees me again in January. I spoke to a helpline rheumatology nurse about the tightness and pain in my mouth a month ago but she said my rheumy hadn't written to me yet and had looked at me latest bloods and said non urgent as my CRP was only 5.2. (Normal here is 0-5). She said I should go to GP about it. GP says can't help me until they've heard back from my rheumy so I'm left in pain, untreated for some kind of connective tissue disease. It's been 11 weeks since I saw him so very frustrating. So I know how you feel!
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