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kaykay

UCTD and Sjogren's

9 posts in this topic

Hello -

 

This is all freaking me out - naturally.

 

I was diagnosed with UCTD in March 2009 - a positive ANA and positive dsDNA the expectation was lupus. (joint pain, mouth ulcers) developed Sjogren's in September, then severe GERD also in September. I'm still struggling with those issues and am not able to eat properly. Sometimes I throw up or have loose bowels, which is very odd for me because I have struggled with constipation most of my life. Now I'm getting white patches on my chest and arms and little red dots all over (chest, hip, thighs and face). Oh, also a dry non-productive cough. Let me say that those latest symptoms (the skin changes and cough) are not severe at all, just noticeable.

 

I'm on a three month cycle to see the rheumatologist and January 5th is my next appointment. I need to ask the right questions and get the treatment correct. I am currently on plaquenil which seems to help the joint pain. Am also on prilosec and vitamin D - and restatis.

 

One other thing is dizzy spells, balance problems.

 

Though my fingers seem sensitive to cold they have never turned white or blue.

 

Your advice and opinions are much appreciated.

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Hi,

 

First I want to thank you for a great forum - it is so wonderful to have access to your experience and thoughts.

 

I'm new here and not sure if I belong or not.

 

I went to my doctor a year ago with joint pain - not bad but Sissy has rheumatoid arthritis (RA) so she encouraged me to go. My primary ran an ANA panel that came up slightly positive - and a low but positive dsDNA, all other sub sets were normal - the dsDNA I believe to be highly suggestive of SLE.

 

I developed mouth sores in early spring and summer. That and joint pain was it, but I developed a relationship with a rheumatologist and deferred treatment.

 

Until September. In September I was brought to my knees with eye pain, dry eyes that I couldn't keep open, it was really weird because it came on so quick. They put plugs in the tear ducts and started me on a round of eye steroids then on restasis. Then only a week or so later I developed GERD, again sudden onset and debilitating. I met another doctor, a GI guy who put me on a pump inhibitor that really helped until this last weekend.

 

What brought me here was research on how GERD and Lupus might be linked. Then I noticed the white patches on my skin, then I noticed all these red dots starting up, on trunk, legs, face, and arms.

 

I do not have Raynaud's, or tight skin, or any other symptoms that I didn't mention. So I guess it could still be something else, I'm just worried about the new skin involvment.

 

I'm a 49 year old female. I see my rheumatologist next week. What should I ask for? What should I ask? I live in Boise Idaho and there aren't any specialists around here though I like this doctor, a lot I wonder how many patients he's seen with systemic scleroderma (sigh).

 

Thanks - love and comfort to you.

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Hello Kaykay

You'll have noticed that I've linked 2 of your posts together and moved you onto the main forum. You currently have a diagnosis of UCTD which makes you eligible to post on the main forum, other members also have undifferentiated connective tissue disease or mixed connective tissue disease, you don't have to have scleroderma to post on the main forum.

From reading your posts it seems that you're wondering if you are moving from a diagnosis of UCTD to one specifically of scleroderma. Hopefully when you see your rheumatologist you'll have a better idea of what's going on and whether the skin changes indicate a diagnostic one.

I do think you should mention to the rheumatologist your dry cough because it can indicate lung involvement. Now I say that as a non medical layperson having no idea if it's you lungs or not but just in case you should mention it.

Mouth sores are a popular topic right now, have a look at the topic mouth pain in diffuse sclero to see how others deal with them. I don't have this problem and am very glad not to!

I can't really help with what to ask at your next rheumatology visit because I was diagnosed at my first visit with scleroderma. Hopefully others will chime in with some ideas for you.

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi KayKay,

 

Welcome to Sclero Forums! I'm sorry it is because of health issues, though.

 

Anyway, what I want to mention is that Undifferentiated Connective Tissue Disease (UCTD) is a full, valid diagnosis, as is Sjogren's syndrome, as well. So, you aren't actually undiagnosed, rather you are concerned that you may not yet be "fully diagnosed".

 

I went for years, with a whole collection of diagnoses, still feeling basically "undiagnosed" and not comprehending the difference. I just had the unpleasant conclusion that too many of my symptoms were unaccounted for and that if anyone sat down to do the actual math of attributing certain symptoms to certain diseases, they'd find that there was a definite gap. I had one doctor who would get pesky when I tried to pin a certain symptom down and just exclaim, "But you have connective tissue disease!" and for him that was the beginning, the middle and the end of the discussion.

 

And it's funny, because in a way, I could see what he meant, and in another way, it was still insufficient. So over the years it took other specialists to sort things out into various symptom and disease categories, at least enough so that we are all fairly satisfied that most of the major things are rather well accounted for.

 

Well, what I am getting at is that you ARE diagnosed. But if you're like me, you won't really "feel" diagnosed until at least most of the outlying symptoms are better accounted for, by whatever illness.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello all,

 

Thank you for your thoughtful replies - I guess when I said 'undiagnosed' I just meant not diagnosed with scleoderma.

 

Saw my rheumatologist yesterday, he said the red dots on my body aren't the kind to be concerned about - absolutely sure about it - it has to do with their border. Said don't worry about the white patches or the calcium lumps in my fingers. Was a little interested in the burning itching sores that pop up mostly on my arms and was pretty concerned about the breathing, coughing issues. He is sending me for four tests; ekg, echocardiogram, chest x-ray and breathing test of some sort.

He took me off of Plaquinel due to the ringing in the ears and wants to see me in one month.

 

Oh, he changed my diagnosis from UDCT to SLE, lupus. He gave me a prescription for NSAID's for joint pain.

 

I think I have to limit my future time on the internet, I get myself too worried and obsessed.

 

thank you again for the forum, all the information, links and your personal experiances -

 

much love to all.

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I also have UCTD and Sicca Syndrome--tests for Sjogren's are negative, though my doctor says "if it quacks like a duck and walks like a duck, it's a duck"--and also severe osteoarthritis and "some type of" inflammatory arthritis in both hands. Lots of joint damage there, and I just turned 54.

 

Because none of the tests for RA were ever positive--and still aren't--most rheumatologists wouldn't treat me, so the erosion to my joints continued until I can barely sign a check or lift a cup. My hands are gnarled and hideously ugly. :( With the Raynaud's as well, I'm quite a sight. Needless to say, I don't do many booksignings these days. :(

 

I got an appointment to see a rheumatologist at National Jewish Health, and just went in for my follow-up appointment last week. Again, my blood work is all inconclusive, so my official diagnosis is still UCTD, etc.

 

I always have low complement levels, elevated c-reactive protein, slightly high eosinophils, an IGG-Kappa MGUS (which has been unchanged for a decade), and stage 3 chronic kidney disease (with one kidney--other one lost due to birth defect in childhood).

 

Doctors look at me and are as stunned as I am when all the tests come back negative. No RA factor, no ANA, nothing. My fingers and toes will turn colors right before their eyes, and my hands have horrible joint damage per x-ray and visible. My spine is crumbling and my hips are eroding.

 

In short, I'm a mess.

 

My new rheumatologist wants to try Orencia infusions to prevent further joint damage and help with the fatigue. The expense and side effects are daunting.

 

Has anyone else with a UCTD diagnosis tried this medication, or another one of the "biologics?"

 

Thanks.

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Hi Punydeb,

 

How awful, your arthritic symptoms sound excruciating and debilitating and I'm so sorry to hear that you're suffering such a lot of pain and discomfort with them.

 

I have no personal experience of Orencia but I hope the link I've included will be helpful to you and also this link to Biologic agents.

 

Please let us know how you get on with this treatment should you decide to go ahead with it.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Punydeb

 

As you know UCTD is a valid diagnosis in itself. Blood work can be so inconclusive, like yourself I have a negative ANA, also have negative SCL-70 and normal rheumatoid factor but have systemic sclerosis with heart involvement. Mind boggling to think my blood work says there's nothing wrong with me!

 

I've not heard of Orenciabut we do have some information on site about it. I have however heard of Rituximab because a dear friend has recently had an infusion of it and thinks it has helped her.

 

It's difficult to decide between benefits vs side effects, which is worse, present symptoms or possible side effects?

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thank you for the informational links and empathy. Much appreciated. As I learned when I lost my husband to cancer in 2005, only someone who really has shared experience really understands. Those of you who've lost a spouse know what I mean about all those well meaning friends who know "exactly how you feel" because of some other family member or distant relative they've lost to cancer. Not the same. Not at all. :(

 

I'm off-topic. Sorry.

 

I learned yesterday that the rheumatologist I've been seeing at National Jewish Health has no future appointments in their system. I don't know if this means she's leaving or what. I just saw her on May 19th, when she told me to schedule a follow-up in 3 months. The infusion clinic is still trying to get the Orencia authorized, and they're a little confused about how to proceed without her around as well. They have enough information in my records to fight with my insurance company, and they also have her orders for the medication. At least...

 

Meanwhile, the plot thickens. My endocrinologist requested prior authorization for Prolia infusions for my severe osteoporosis some months ago. It finally came back and was approved. I guess they decided that's less expensive than more broken bones. Duh! :blink:

 

Some of the horrible side effects for the Prolia are the same as the horrible side effects for the Orencia. Further, furthermore, I've learned that if I begin Orencia and it actually helps, I have to remain on it indefinitely. If I discontinue treatment for any reason--financial, whatever--my condition will revert to pre-treatment stage or advance rapidly.

 

All my physicians, including the rheumatologist, are more concerned about treating my osteoporosis and preventing additional fractures. So now I'm thinking I should wait on the Orencia and make sure I tolerate the Prolia first.

 

And ensure I actually still have a doctor on staff at NJH. :(

 

Thanks.

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