Maybe getting somewhere at last - scleroderma with Sjogren's anyone?

[MAT51]

I'm not going to say that I have diffuse systemic scleroderma yet because I see the new rheum for first time on 24th of next month. But I found out that my newly positive ANA (1:320) has a nucleolar pattern. My IgG and IgA are both raised. I have high inflammatory markers and raised compliment. Part of me wonders of this could be due to a systemic candida infection (yeast infection) but then I remember how long all this has gone on for and original diagnosis of RA. The yeast infection and constipation are relatively new.

I don't have clear cut signs of scleroderma in my skin apart from small telangisasias on my face and on the palms and finger tips of my hand and under my nails. I only have mild Raynaud's, worse in my toes than fingers. When my RA (probably misdiagnosed) symptoms started the neuropathy started simultaneously. Whatever I had has left my hands permanently stiff and tight. My wrists and arms are weak and my tendons hurt in my ankles and knees.  I have a strange feeling of tension in my mouth and nose and burning lips and gums. For ages the skin of my face felt terribly tight but the methotrexate and Plaquenil seemed to see this off. I have GORD and dry fingers and hard skin on toes - not hugely shiny below the pip joints or knuckles but maybe it never progressed to this because of all the DMARDs?

I had my lip biopsy ten days ago. It went fine and my mouth is more or less recovered apart from a swelling on the site and an increase in the usual gum and lip burning 24/7. I do have some strange sensation, when I'm eating or drinking, of a hair on my lip. It is fleeting but a little disconcerting - hopefully it will pass and I'll stop ruining my finger over it to find the phantom hair!

I have to wait until 19th to get the result of the biopsy but as my mouth isn't particularly dry (apart from when on Cymbalta last year) and my eyes aren't terribly dry - although I do use drops quite regularly still - I don't  think I have primary Sjogren's. They removed four saliva glands which they felt was enough. We will see!

[eija]

I'm sorry you're still struggling with so many issues.

I'm not really familiar with Scleroderma, other than what I've read of it and the fact that my husband's cousin had it. Her's was systemic and very severe, but eventually she died because of lung cancer, not Scleroderma. I think she was somewhere around 60 at that time.

I believe that like other autoimmune diseases, Scleroderma too can vary a lot from one patient to another. And that makes diagnosing it rather difficult. Also, it too can overlap with several other autoimmune diseases, like SLE and myositis. I hope you'll get a definitive diagnosis soon, and that it isn't Scleroderma. It isn't a nice disease at all.

Please let us know how things evolve with you.

-e-

[anita]

As I (en bloc) told you on the NT forum, there was a member here named MichBlueEagle that had both Diffuse scleroderma and Sjogren's.  He no longer posts here, so you can't even look at his old posts (I already checked in hopes that is was possible, as he documented many aspects of his symptoms and Dx process).

Your rheumy should know whether or not this is possible based upon your symptoms and skin changes (even minor changes).  There are other tests to confirm, but I honestly don't remember everything MichBlueEagle had done.

He had actually sent me some Pm's about his Dx process, so i will look through them this weekend to see if anything might be of interest to you.

[MAT51]

Thanks very much Anita. I had hoped that this person you told me about might read this post and come out and advise me - shame he appears to have left. Unless he deleted his account and is back under a different name perhaps. It's strange because I've assumed Sclero to be the worst rheumatic disease of all but when I read up it says the first five years are the destructive ones often - and that it sometimes goes away after this. Which sounds less devastating a prognosis than I had assumed. And maybe the DMARDs and steroids I took for RA have got me through the first five years without as much damage as there would have been otherwise. Still hoping I have Sjogren's over Scleroderma though.

[MAT51]

I'm sorry you're still struggling with so many issues.

I'm not really familiar with Scleroderma, other than what I've read of it and the fact that my husband's cousin had it. Her's was systemic and very severe, but eventually she died because of lung cancer, not Scleroderma. I think she was somewhere around 60 at that time.

I believe that like other autoimmune diseases, Scleroderma too can vary a lot from one patient to another. And that makes diagnosing it rather difficult. Also, it too can overlap with several other autoimmune diseases, like SLE and myositis. I hope you'll get a definitive diagnosis soon, and that it isn't Scleroderma. It isn't a nice disease at all.

Please let us know how things evolve with you.

-e-

Thanks very much e - I hope I don't have it of course. But like any other CT disease I think it comes in degrees of severity and perhaps I have had it relatively mildly or got off light because the RA drugs I was put straight onto have prevented it from doing its dastardly worst in the first five years. My main concern is for my vascular system because I sense this is the part of me that is most affected - especially during the winter months or in extremes of hot and cold.

[Tharrell]

Hi MAT, I think I told you before that I have Mixed Connective Tissue Disease due to positive ANA and anti RNP and sjogren's due to positive ss-b. I display symptoms of scleroderma, lupus and ra. I have the classic swollen hands and raynauds, but also the hardening skin on elbows and a spot on my knee due to the scleroderma. Thankfully not having the specific antibodies for either scleroderma or lupus it should be milder for me with less to no organ damage. My rheumy is treating me mostly for raynauds and sjogren's or at least the dryness aspect of sjogren's. I'm trying to get her off that since my ra is so much worse eventhough I don't have positive blood markers for that or the inflammation. My lip biopsy was negative.
I hope you will finally, finally get help and treatment!

[MAT51]

Thanks Tharrell. We seem to have the polar opposite blood test results don't we?! Not symptoms though although yours sound more classic. I'm interested in the mention of Sclero on your elbows though. I have a strange rough, hard area below one of mine that I assumed must be just dried skin but, similarly to the tops of all my toes it doesn't itch and skin moisturising cream seems to make little difference. Wondering now - will look in mirror and see! Take care. Mat

[Linda196]

You might want to research CREST syndrome, also called limited scleroderma.

[MAT51]

Thanks Linda. Yes I already have but I think my ANA and symptoms point more to diffuse than limited perhaps. I have not got a long history of Raynaud's - mine attacked suddenly along with quite aggressive RA symptoms. I think it is more diffuse than limited possibly but perhaps the dmards I took for five years hit it hard from the outset. It is the first five years that count most with diffuse I've read. Maybe I'm jumping the gun and adding 2+2 to =5 though. The rheum seemed to suspect Sjogren's most because of the NLD small fibre neuropathy.

[Deb 27]

MAT, about 6 years ago I got diagnosed with morphed, which is scleroderma of the skin. I've had a lot of weird symptoms. I hope you don't have Sjogrens. I had a really bad bout with dry mouth when I was on cymbals as well. Didn't know I had SJS back then, thought the cymbalta caused it all.

[MAT51]

Yes I had a really dry mouth on Cymbalta too! And Amitriptyline caused severe sicca because it turned very mild once I stopped it after three years.I want a diagnosis of something so I can work out my strange neuro symptoms better. Sjogren's seems the most obvious cause but my antibodies point to Sclero so perhaps the Sjogren's is a secondary.

[trc1962]

I have long wondered if I deal with sclera because my changes have been very vascular. My legs turn purple as do my hands and feet and my neuropathy has always been classified as "vascular neuropathy" with no clear diagnosis. My lip biopsy looked like sjogren's but wasn't positive in the usual sense, my markers don't show up in blood work. My primary has always believed I deal with a collagen vascular disorder that is like MCTD but who knows? I will do some reading up on the scleroderma and see what I can find. Hope you get some answers!

[MAT51]

Have you been tested three ways for Hughes Syndrome/ APS at all? This can cause discolouration in the form of Livido and neuropathy too I believe. Maybe worth researching. Also ANCA negative forms of Vasculitis might be possibilities for you? I'm sure you've seen specialists but I believe some of these seronegative forms of connective tissue disease can take a long time to show up in the blood and make themselves obvious enough to diagnose. That said we don't want to wait for things to show up in the form of tissue damage!