[scrapperjen]

I am new here, so I apologize if this isn't the right place to be.

Is there anyone here that has this condition? I did a search on UCTD and fibromyalgia and found this site. I'm feeling a bit confused about all this since I seem to have many symptoms of lupus, but neg ANA and other tests. I was called by my rheumy today telling me all the tests were negative and that we would discuss it when I see him again next week, but that he would be treating me for UCTD. He's already treating me for Fibromyalgia with cyclobenzaprine, but it doesn't seem to be helping as of yet.

I just want to find someone who is going through the same thing I am, so I thought I'd try here. I've had 2 different rheumies tell me, upon first glance and history, that I have lupus only to have them say no it's not after the tests come back.

I hurt, I have fluid around my heart, lungs, and in my abdomen, I've had many surgeries in the past 6 years and, according to my new rheumy, I have something autoimmune going on in my intestines. If I have so many symptoms (I didn't list them all) and other autoimmune things -- I have Hashimoto's Thyroiditis as well -- why are all these tests turning up negative?

Oh, if this isn't the place for me to be, can someone direct me to a message board for UCTD people? Thank you.

 

[Clare.T]

I just answered your first post.
This forum is exactly the right place to be because UCTD is a variation of lupus the same to all practical intent and purposes. Whether it's called lupus or UCTD is a diagnostic technicality and I am sure that many people here with an SLE diagnosis might have been given an UCTD diagnosis by another doctor. UCTD simply means there are none of the four specific features of lupus or of any other autoimmune connective tissue diseases such as Sjogren's, polymyositis scleroderma, Mixed Connective Tissue Disease and whatever I may be forgetting.

I can't help with the fibro medication but many other people will be able to. Just to note that this medicine's brand name is Flexeril. There are several mentions and threads about treating fibro on the forum so you might meanwhile find some useful information there. Or post with a specific title such as Flexeril for fibro? on related conditions or medications section.


Clare

 

[denalirat]

Hi there!

The docs that diagnosed me verbally told me lupus and then wrote down on my chart UCTD, simply because I'm not showing specific antibodies (anti-dsdna, anti-sm) and haven't had a biopsy or anything. I actually have enough ACR criteria to be diagnosed (I fulfill 7-8 of them), but the exact explanation from the Mayo doctors was that I am young and they wanted to try and give me a chance to get my health insurance and life insurance in order before giving the SLE diagnosis on paper...otherwise I'd be completely messed up for life. I don't know if this was just a courtesy thing on their part or what...they gave me literature on lupus and told me they were calling it SLE, but still decided writing UCTD would be better. Who knows. They've told me that what one doctor considers UCTD, another might call SLE and vice versa...the important part is that the treatment is ultimately the same. I asked my GP about this technicality out of curiosity because his wife is also diagnosed with UCTD...he said the same thing as everyone else (haha) and basically considers her to have lupus.

My case sounds a little similar to yours, although I do have a positive ANA. I have fluid in the lining around my lungs and heart (pleural effusion, pericardial effusion) as well as fluid in my abdomen and pelvis. I have also had a couple of surgeries and intestinal problems, although mine seem to be a CNS problem that is messing up messages and giving weird sensitivities. Probably non-SLE related and just a random thing!

Have they started you on any treatment for the UCTD? And if so, what exactly did they start you on?

Definitely stay at this board...I think there are many in the same situation and I'm sure you can find some helpful answers here.

-kit

 

[scrapperjen]

denalirat -- I haven't been started on anything for the UCTD yet, but he told me when I saw him next Thursday he would be starting me on Plaquenil. We'll see if he follows through with that when I see him! I'm not sure he's going to verbally say I have lupus, but write down UCTD like in your case, but I do hope I get treated with something. I'm taking cyclobenzaprine for fibromyalgia and it's not doing a thing so far. Most of my pain is while I'm up and about, not when I go to bed (lying down alleviates the pain a lot), which is when I have to take the cyclo. I just want to feel better! I'm sure all of you understand that one.

 

[Lily]

Hi Jen and welcome :welcome:

I was reading your other post on the thread "How Long Did it Take You to Get Diagnosed?" Here's something for you to read and also to wave at your mother :wink2:

http://www.emedicine.com/med/topic2937.htm

love
Lily

 

[heavenly]

Welcome scrapperjen

scrapperjen :wavey:

Yep, same thing here. I had so many yrs. of flipflopping diagnosis that it was hard to keep track of. And yes, I was also later told Undiff. Diffuse CTD. And I have AIH (Autoimmune Hepatitis) & many other things as well, which is common w/this autoimmune stuff.

So, just know what you're going thru is normal and YES, this is definitely a great place to be for any type of autoimmune connective tissue disease. There's so much encouragement in being able to read all the other people's own stories. And to be able to ask anything or talk about symptoms, tests, or whatever. It's great for people to have others to relate to.

BTW, you said you had negative ANA. Were you only tested once or many times?

Enjoy this site. :flowery:

 

[scrapperjen]

Heaven -- I was tested twice I believe. Once was about 4 years ago and the second time was just a couple weeks ago. Both were negative.

 

[LoveHeals]

I was diagnosed with UDCT disease 7 months ago and I was just recently diagnosed with SLE disease. It is a very frustrating process and truthfully UDCT disease is just a formality until the rheumatology team is 100% sure that one has lupus. I have symptoms from six different autoimmune diseases and I continue to have those symptoms despite the change in my diagnosis.

Good luck and stay hopeful because it is a difficult road.

I am very young and I am having to make lifestyle chnages that I never thought I would have to make at 22 years is a challenge. You can do it! Stay strong!

 

[LoveHeals]

Plaquenil is the greatest drug on the market - in my humble opinion and experience - for SLE.

 

[marymackay]

informative replies

Each of these posts were so informative for all of us seeking d/x or further help about emerging, changing symptoms. Thanks,Lily, your post was spot on, particularly the site on Undifferentiated Connective-Tissue Disease, applying to some of us.
Thanks to all
mary

 

[raggedyann1]

Just a clarification on UCTD. It is a real diagnosis and some patients never have a change in their diagnosis. For anyone who is confused click through on the link that Lily gave for an indepth explanation about UCTD.

Here is another link that is an editorial by Dr. Daniel Wallace on the subject of UCTD. Here is an excerpt.

Over 20 years of observations, the outcomes of 410 patients originally enrolled were consistent with one third having no disorder at follow up, one third still manifesting UCTD, and one third evolving accepted criteria for rheumatoid arthritis, primary Sjogren's, scleroderma, systemic lupus erythematosus or inflammatory myositis [3].

http://www.chemweb.com/journals?type=issue&jid=15733971&iid=2003

Take care,
Karen

 

[Tallulah]

Hi Jen, I just wanted to say that you are lucky that you were given the diagnosis of UCTD and are being started on something. I've had tons of symptoms, feel rotton and have had a positive ANA for 5 years and my Dr. says I don't have UCTD. He calls what I have "grumbling disease", whatever that is. I guess he means I'm always grumbling.
Take care,
Hugs, Tallulah

 

[halfpintfl]

Hi there, you are already on the right road now. You found this site, and you said that at your next appt. your dr. is going to start you on Plaquinel. That is just great. Plaquinel is well tollerated by everybody,as far as I know. That takes 3-6mos. to kick in (or longer). But while that is beginning to work on your body, he will keep observing you, making notes, waiting for you to hand him a sheet of your symptoms, and run some mmore tests. You are on your way,it sounds alright, so be well.

 

[Roxygirl]

I was recently dx with UCTD (possibly lupus) and fibro. I was started on Plaquinel and lyrica. I was wondering how people who posted on this thread several years ago are doing now

 

[keebler]

Hi,
The original poster hasn't been back since 2008.
Perhaps you could start a new thread?
Take care,
Lyn

 

[Whistle down the wind]

Hi there I have been diagnosed with UCTD too and have a number of the diagnostic criteria for lupus...it is so frustrating that they never seem to catch anything in my blood work. I do believe I have he this since childhood as many of my symptoms persist. However, with age, they are gathering momentum and some days Struggle to get up and go to work. I am age 52. Message me if you want to chat further

 

[keebler]

Hi Whistle,

Would you please start your own thread? This thread is 5 years old.
Im going to close this thread.
Thanks,
Lyn