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UCTD Diagnosis

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#1 Chimama



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Posted 26 September 2010 - 09:51 AM

I mentioned In a prior post about having a postive ANA for 11-12 years now. Scl70 /rheumatoid factor. And hbl27. I think it's called. Anyways, also about 8 years of Raynaud's and fibromyalgia. That's my only clinical signs. My doctor said for now she will call it undifferentiated connective tissue disease. I have seen her since day one -12 years ago.

I also just left Mayo for a 2nd opinion. I was given the diagnosis of UCTD there as well. Sometimes it feels it's just a label until x, y and z happen. Told it may never worsen or it may. Just wondering if anyone else was given that diagnosis.

For now I just manage the Raynaud's by staying warm. It is not severe at this point. And fibromyalgia I manage with baths, rest, advil, etc. My doctor was going to start me on plaquenil but the Mayo doctor said it's not worth it yet as it's a drug given once they can measure if it's improving something. Not worth it for Raynaud's and fibro.

Any other UCTD people out there?

#2 Margaret


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Posted 26 September 2010 - 11:10 AM

Hi Chimama ,

Four years ago, my son, at age 18, started with an unexplained 20# wt loss, esophageal dismotility, loss of voice, major fatigue, restrictive lung issues, esophageal spasms, + ANA, speckled pattern, and + Anti-RNA Polymerase 1/111. He had no skin issues, Raynaud's, or nailfold capillary irregularities at that time. His gastro doctor and ped concluded it was sine Scleroderma. After going to a rheumatologist, though, they called it UCTD because he didn't have any skin issues or Raynaud's. They did start him on Plaquenil 9 months later and his internal issues got better. Last winter, though, he started showing signs of Raynaud's and dry mouth/eyes. He's still UCTD but his new rheumatologist says they treat the symptoms....not the name. His major problem these days is the chronic fatigue.

Take care, Everyone.

#3 froggy


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Posted 26 September 2010 - 11:59 AM

Hi Chimama, Thank you for posting on my thread. I saw your post in my inbox and thought that I would reply to you in much the same way you did with me. =) My Rheumatologist is still holding off on saying that it is fibromyalgia until she sees if the Plaquinel works and/or if in a month or so, the pain medication and other things do not work, she wants to try some antidepressants that they use to treat Fibromyalgia. Her thinking is that if it works, then I must have it. She is holding off on the diagnoses because I do not have pain in most of those pressure points which signify Fibromyalgioa, however, I definitely have a neuropathy type pain everywhere.

With all of that said, she did write the diagnoses as CTD (don't know why she didn't add the "U" in there because whatever it is,it's certainly "U"! =))She also wrote down Fibromaylgia as well. Perhaps this was for insurance purposes so that if she decides to try the antidepressants, there won't be an argument? I have Raynaud's which went into overdrive these past few months, but really began to be painful after the birth of my twins in March of '09. She gave me Procardia for that, but it is not helping at all. I believe it was Craig that said that Viagra and Cialis tend to work best for Raynaud's. I will ask my doctor about that during the next visit. I'm glad to hear that yours isn't bothering you all that much.

If you read the responses to my post, it would seem that you are definitely not alone. This is extremely comforting to me, and although we do not have the answers we want, it is so good to be able to come here and talk to everyone who understands. I do hope you find some answers soon.

Peace and Blessings,

P.S. My rhuematologist told me that 50% of the time people will present with negative blood work and symptoms, then several months or even years later, they will have positive blood work. The other 50% never have positive blood work and they just have to treat the symptoms and diagnose based off of that. In a case like yours, you seem to have the positive blood work, but not many symptoms that can give you an outright diagnoses. I have read that this does happen quite a bit, but not sure what the stats on that are. From what I've read on here though, the important thing is to keep it monitored to make sure that nothing is going on internally, and it sounds like you are doing this.

#4 Jalee85


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Posted 01 August 2011 - 05:26 AM

I have a diagnosis of UCTD I was diagnosed in April of 2011.

It was kind of a shocking diagnosis considering previously I had a diagnosis of AOSD (Adult Onset Still's Disease) which is a very rare autoimmune disease. But I think that if I did have AOSD it isn't rearing it's ugly head up at me right now.

I have just gotten Raynaud's this last January. I also have capillary drop outs consistent with scleroderma. I have telangiectasia and GERD, but I also have a malar rash and other lupus like issues. I also just was diagnosed with migraines; he gave me propranlol which isn't good for Raynaud's but I'm on so many Raynaud's meds I'm hoping they will counteract the other drug at least in my extremities. I also have Imitrex if need be and worst case scenario a 9 day prednisolone pack to take if my migraines last more than 3 days. How long have you had Raynauds for? Many with UCTD with capillary drop outs end up with progressive Scleroderma; quite frankly that is what I fear..... So I'm just hoping for remission....lol