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Posted 6/10/2012 5:20 AM (GMT 0)
After being unwell for quite sometime, I've finally been diagnosed with UCTD (Undifferentiated Connective Tissue Disease). My symptoms are most like Lupus and Sjogren's Syndrome.

I'm on Plaquenil and have been on it for almost 9 months and I've been doing quite well. My joints don't swell anymore and my fatigue and other symptoms have mostly improved.

I have been having problems with my liver as well. I was originally told that whatever I had wouldn't affect the organs because it was mild. But now they're saying that my liver problems are caused by my immune system. Anyone else having problems with their organs and UCTD?

And how do you tell people what's wrong with you? UCTD is a mouthful and is so confusing to explain.

Anyone else have problems with going in the sun? I get really sick and break out in rashes.

Thanks.
Posted 6/10/2012 6:25 PM (GMT 0)
I have problems with the sun. I use 100 spf sunscreen, sun clothes, and sun hat.
For long times outside I have spf umbrellas.
Posted 6/10/2012 7:37 PM (GMT 0)
Hey, PBP, I have "UCTD," too, though my rheumatologist and dermatologist think it has more feature of dermatomyositis than anything else. My major symptoms are persistent rash and skin lesions and muscle pain without noticeable weakness. I take Plaquenil, but I've not been on it long enough to notice any improvement; I hold on to hope. I have not had severe sun problems, though my nose turns bright red the second I go outside. Go figure. And I have not had any organ involvement.

As far as explaining to other people, I don't bother using the term "UCTD" or explaining what it is. I tried that a few times, and I just find it exhausting to educate people. My closest friends know I've been dealing with undiagnosed health issues for over a year now, so I still just refer to this as my "Mystery Illness" with them. If I need to explain things to other people, I just say something along the lines of, "I have an autoimmune disease that is affecting my skin and muscles."
Posted 6/10/2012 9:04 PM (GMT 0)
Hi, I'm a former UCTDer...was originally diagnosed with UCTD but the dx changed to MCTD when more and more symptoms pointed that way, the high levels of RNP and the clinical symptoms started adding up.

I have problems at times with my liver enzymes being elevated...mainly the ALT, that can be a sign of liver damage. My enzymes at times were 5x higher than the high normal range. My bloodwork is being monitored closely and my MTX is sometime cutback.

Do you have elevated liver enzymes? Differant meds can cause the elevation.

In the past I was on plaquenil, Imuran and prednisone...now it's just the Methotrexated for the MCTD. Last year, I was on 40 mgs prednisone daily for awhile...still have the belly from it :0

Good Luck to you

Hugs, Robin
Posted 6/10/2012 11:47 PM (GMT 0)
Hi Paperbagprincess! I also have UCTD and have similar symptoms - lupus-like and Sjogrens. I was diagnosed in the beginning of January and have been taking Plaquenil as well. All of my symptoms have been much better with the exception of constantly getting blepharitis in my eyes, it has been quite an adjustment getting used to glasses (not really able to tolerate contact lenses anymore). My rheum was not sure about the sun, but I found out the hard way a couple of weekends ago that I need to be careful - ended up having a good rash and feeling pretty bad for a couple of days after being outside too long.

I am in total agreement with Elbee, I have given up trying to explain what UCTD is...
Posted 6/11/2012 4:15 AM (GMT 0)
Hi PBP!  I'm another "UCTD-er".  My symptoms are also closest to lupus and Sjogren's.  I've been on Plaquenil for 3 + years.  I'm glad you're doing well on it.  I found it very helpful with the fatigue initially.  It doesn't seem to do everything I wish it would, but I've discovered the hard way that it actually does quite a lot, and I'm careful not to miss a dose.

I had fluctuations in my liver enzymes before starting Plaquenil, and continue to now.  So far, they continue to be at about the same level, and haven't been too scary.  I personally think that when I lean too heavily on the anti-inflammatories, they go up.  Sometimes they're fine.

I am also quite sun sensitive - which extends to fluorescent lighting in some places.  I will get red and rashy pretty instantly with direct sun, but even indirect (shady) exposure too long will make me feel weak and weird and can lead to flare, sometimes delayed anywhere from a couple hours to a couple days before it sets in.  I am also very faithful with hats and sunscreen.

I don't try to explain UCTD anymore either.  I have fibro, too - and for longer than the UCTD.  I hate the question "How are you feeling?"  from people who don't really want to know and don't have a frame of reference for the answer.  Honestly, if I wasn't dealing with this stuff on a daily basis, I wouldn't have a frame of reference either.   So I keep it light or try to avoid the issue altogether.  Not a perfect approach - but I don't think there is one. If I do try to explain to someone, I also say (like Elbee) an autoimmune condition that causes inflammation and fatigue in muscles and joints.

I have, however, learned how to say "no" and "maybe" or change plans when I have to, and not feel guilty about it.  Frustrated, maybe, but not guilty.  And I sure don't take "good" days for granted ;-)

Lucy

 

Posted 6/11/2012 5:29 AM (GMT 0)
Thanks so much everyone.

Joy, I just avoid the sun completely. I think maybe even the heat makes me unwell too.

Elbee, that's interesting that you're more Dermatomyositis, I haven't really heard that being a common feature of people's UCTD. What would it take for them to commit to that diagnosis? I hope you do experience some improvement from Plaquenil. Around the 4 month mark, I had to come off it because of my liver (just to rule it out as a cause) and I flared badly. Then I went back on it after 3-4 weeks when they realised it wasn't that and man it was amazing. So maybe, you could try going off it for a few weeks and then back on it and see if that helps? That's how I'm feeling about trying to explain UCTD. I'm happy that I have a diagnosis, but I would love it to be something that could be easily explained!

Thanks Robin. That must be a relief that you've got a more stable diagnosis. Did you originally test negative for the anti-RNP? Yes my liver function tests have been out, mainly ALT, AST and GGT. I'm only on Plaquenil, a NSAID and Omeprazole. I don't drink any alcohol and when I came off the medications my liver tests got higher. The only time they've gone normal is when I went on a 3 week course of Prednisone, which my doctors say is 'interesting'.

Thanks Beachgirl, it's nice to 'meet' someone with similar mix of symptoms. I've been on Plaquenil since last September, but they've only said UCTD (although implied it's a connective tissue disease) in the past few weeks. It sounds like we're in the same boat with Plaquenil too!
Posted 6/11/2012 11:56 AM (GMT 0)
When, I first became symptomatic I wasn't showing elevated levels of RNP. I did have joint pain, allover achiness and inflammation. My first rheumy took blood work and x-rays of hands andfeet...bloodwork came back negative. X-rays showed I had osteoarthritis, but he also thought that I might have the beginning of RA.

A few years later, a new rheumy and more bloodwork showed elevated levels of RNP...I was diagnosed with UCTD at the time and put on plaquenil. I had rashes and inflammation. I developed Raynauds and a biopsy determined that my papilary and reticular dermis showed sclerosis with a dense collagen pattern...it was determined that I had scleroderma. I also was showing more signs of lupus and was presenting with muscle weakness. My dx then changed to MCTD with fibromyalgia.

Since then I've added Heart Disease and Pulmonary Hypertension. It is also suspected the I may have microscopic polyangiitis...a vascular autoimmune disease. My bloodwork is showing positive for ANCA.

I know how frustrating it is to have an undifferentiated disease... people have a difficult time understanding even if your disease id defined.

Wishing everyone great days ahead!

Hugs, Robin
Posted 6/11/2012 1:12 PM (GMT 0)

paperbagprincesses said...

Elbee, that's interesting that you're more Dermatomyositis, I haven't really heard that being a common feature of people's UCTD. What would it take for them to commit to that diagnosis? I hope you do experience some improvement from Plaquenil. Around the 4 month mark, I had to come off it because of my liver (just to rule it out as a cause) and I flared badly. Then I went back on it after 3-4 weeks when they realised it wasn't that and man it was amazing. So maybe, you could try going off it for a few weeks and then back on it and see if that helps? That's how I'm feeling about trying to explain UCTD. I'm happy that I have a diagnosis, but I would love it to be something that could be easily explained!

You're right-- and that's where this gets complicated to explain even to savvy people on forums like this! I don't fit the technical diagnostic criteria for UCTD because I do not have elevated ANA. I have muscle pain, but not marked weakness (I am experiencing muscle fatigue more lately when doing my hair or walking up stairs, though, which points to mild weakness). I have skin lesions that look like urticaria (hives), but they last for weeks, and on biopsy, they look identical to lupus, but they show up negative on immunofluorescence (which fits more with DM than lupus). I don't have a characteristic DM rash, except that my eyelids are slightly puffy and pinkish. I have nailfold capillary changes and hemorrhages. I have repeatedly and markedly low C3 and C4, but no other blood tests have been abnormal, and I have not tested positive for any antibodies.

So, I think my rheumatologist just said "UCTD" to get me on Plaquenil, even though I don't have the positive ANA necessary for that diagnosis. He said that honestly, he had never seen anything like this, but it's definitely some connective tissue disease that may show itself as something diagnostic in months or years. It points more to DM than anything else. I've been dealing with it for almost a year and a half now, so if the Plaquenil works, I'll be happy.

See how it's hard to explain that to people? I don't even try usually, even on forums!
Posted 6/12/2012 4:33 PM (GMT 0)
MCTD, lupus, scleroderma and polymyositis.

Bill
Posted 6/12/2012 5:34 PM (GMT 0)
Bill, I also have myositis...muscle inflammation. MCTD today can also include RA...not all cases are exactly the same...I exhibit mainly lupus,RA and scleroderma symptoms with mine. Now I have pulmonary hypertension...that is something that is often associated with MCTD, but not everyone gets it. We are all differant. No two cases are exactly the same.

Hugs, Robin
Posted 6/14/2012 3:52 AM (GMT 0)
Robin,

What type of myositis do you have?  Lupus can also cause muscle inflammation but the pattern of weakness and inflammation is different from pm or dm.

The classic definition of mctd is lupus, scleroderm and pm.  Docs have thrown in symptoms of other diseases like RA and dermatomyositis into the definition but in any case the marker of mctd is the presence of the anti rnp antibody.  Every case is different in presentation and the symptoms exhibited and also in the progression of symptoms, evolution of mctd, and response to treatment.  But that is similar to all other AI diseases.

My case started with lupus symptoms, then pm and scleroderma. 

Just for the record, pulmonary hypertension is not a disease but a symptom.  Someone with mctd could have more than one cause of PH...blood clots, pulmonary sclerosis.....and there are other causes of PH.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001171/

Elbee, there are few "common features" of UCTD.  It is really a not clearly defined term for an undeveloped, overlapping connective tissue disease that is not well defined but will probably develop at some future time.  I have heard docs joke that it is the "I don't know what the hell you have disease."

http://emedicine.medscape.com/article/334482-overview

Bill

Posted 6/14/2012 6:23 AM (GMT 0)
Bill, my diagnosis pf MCTD was not made hastily...it took time... lots of bloodwork that showed high elevations of RNP and clinical symptoms that pointed in that direction. I first exhibited the common signs of lupus...joint pain, swelling, rashes and fatigue. I also had raynaud's. A punch biopsy on my forearm determined I had scleroderma. Muscle weakness was evident in my extremities. I see a rheumy, dermatologist, neurologist, cardiologist and a pulmonologist.

At this point I don't care what anybody calls what I've got as long as I'm getting treated for my symptoms and the progression of this autoimmune mess is slowed down. :)

You might not think my diagnosis is a valid one but I trust that my specialists know what they are doing.

I'm glad to hear you are doing well. Best of luck to you :)

Hugs, Robin
Posted 6/14/2012 1:18 PM (GMT 0)
Robin,

I never said or implied your diagnosis is not valid so I have no idea what you are talking about.  Everything you describe points to mctd but mctd as defined by researchers should have the antirnp antibody show up at some point.  Clinical Symptoms can be from soup to nuts.  This is not my information.

Bill

Posted 6/14/2012 1:26 PM (GMT 0)

Bsime said...

Elbee, there are few "common features" of UCTD. It is really a not clearly defined term for an undeveloped, overlapping connective tissue disease that is not well defined but will probably develop at some future time. I have heard docs joke that it is the "I don't know what the hell you have disease."

http://emedicine.medscape.com/article/334482-overview

Bill, thanks for sharing that link-- I love Medscape for its really informative overviews of medical conditions. But yes-- I realize UCTD can be pretty much anything. What I meant is I don't yet fit the suggested diagnostic criteria (as described in Table 1 of that Medscape article). The suggested diagnostic criteria for UCTD are having both (1) signs and symptoms of CTD for at least three years without fulfilling the criteria for any other defied CTD, and (2) a positive ANA, plus not meeting any of the exclusion criteria, like testing positive for certain antibodies or having a malar rash.

In my case, I've had symptoms for only 18 moths, and I've never had a positive ANA. So, the rheumatologist called me "UCTD" then said "well, early UCTD," then went with, "Well, I think you may develop into something else over time, but I don't want to wait that long to medicate you, so I'm going to call this UCTD and give you Plaquenil now."

So, apologies if I was unclear-- I was trying to explain that I don't yet count as "true" UCTD in my doctors' eyes because of my symptoms only being around for a year and a half and not having positive antibody tests.

But you're right-- this is the "I don't know what you have" disease. I think he only called me UCTD to support putting me on Plaquenil. Every doctor I have see has said something along the lines of, "Well, this is strange," or "I've never seen this before." ... Well, wonderful. Always wanted to be unique...?
Posted 6/14/2012 2:51 PM (GMT 0)
Bill, I'm sorry for jumping to conclusions...it took so long to get my diagnosis that I'm super sensitive. Yes I do have high levels of the antibody RNP...that along with clinical symtoms added up to my diagnosis.

Initially, years ago when I first talked to my GP he wrote off my earlier complaints to menopause...it has been a long struggle...I felt no one believed me. Slowy more and more symptoms popped up. I am lucky that I have good specialists and I have hope for my future.

Sorry for hi-jacking this thread....it was not intentional.

Hugs, Robin
Posted 6/14/2012 3:05 PM (GMT 0)
Robin,

No need to apologize...the thread belongs to all of us.  Most of us have gone through diagnosis and treatment hell particularly when you have weird overlapping diseases.  Every one is different in some way and there is no normal presentation or progression.  I had mild anemia and low platelets for at least 15 years but was never sick with anything.  My docs figured out (based on blood work) I was sick before I ever exhibited clinical symptoms (10 months later they appeared) but I still came close to dying and was quadriplegic with a feeding tube before getting ivig which saved my life.  Initial diagnosis was lupus and then changed a few months later to mctd but it took another 2 or 3 months to confirm it with the anti rnp finally showing up.  No matter because I was being treated but it turned out that my case of pm was resistant to pred.

Bill

 

Posted 6/14/2012 10:23 PM (GMT 0)
You're welcome to hi-jack the thread! It was no ones to hi-jack anyway!
Posted 5/23/2017 1:12 AM (GMT 0)
Sort of a shot in the dark.....doesn't look like Elbee has been around here in a while, but just wondering if anything ever changed with the UCTD dx, or if it stayed that way. I don't see any PM function?
Posted 9/25/2017 9:24 PM (GMT 0)
Hi Paperbagprincess, hi everyone! I am 37 and was diagnosed with UCTD in November last year and since then I have been on Plaquenil, first 400mg then 300mg and Prednison (first 5mg, then 10mg then 15mg, then tapered of at the end of May, then symptoms came again and I am on 5mg since beginning of August). I also take Pilocarpin for my sicca symptoms as well as ointments and artificial tears for my eyes. I take multi-vitamin, Omega 3, Calcium+vitD. I eat healthy (but not gluten-free or strict sugar-free) and do yoga regularly (mild forms, such as yin, therapeutic, restorative, etc).
My symptoms included pain in the hands, wrists, elbows, feet, ankles and knees, "funny" ("electrical") feeling in forearms and feet, numbness (especially during the night), carpal syndrome (I wear brace), Raynaud, net-like rash, sicca. At the beginning, before therapy was introduced I also had malar rash, was photosensitive, had oral aphtae and ulcers, and had very strange swelling of my face and lips.
At the time of diagnosis, I had low C3 and ANA IFA speckled positive. All other tests were negative and have remained so. ANA IFA was also negative in April (I was in remission at that time).
Lately, I also suffer from dizziness - all the vestibular tests are ok, MRI is ok. It feels like experiencing an earthquake or living on the boat. I was diagnosed in Europe and moved to the US few months ago.
Since 2009 (or maybe even earlier), I have been experiencing extreme fatigue and brain fog. I have been fatigued all the time. Fatigue completely ruined my life - at that moment I thought I was depressed, my psychiatrist diagnosed me with reactive depression, but she said that it was very atypical. She put me on anti-depressants for half-a-year, which made me feel much worse. In the process, I was diagnosed with PTSD and went through CBT and EMDR. However, fatigue persisted after therapy was successfully completed. Sun really makes me fatigued and weak and I get all red (after the diagnosis I have been using spf 100 and protective clothes).
After my previous marriage broke down due to problems with infertility and my constant fatigue (my ex was an overachiever and I couldn't keep up with his pacing), I found a wonderful man, got married again. We generally share tasks like cleaning, etc. He is very gentle and supportive and does the housework when I feel too weak to do it myself.
I have just started another thread, hoping that someone will answer me if it is possible to combine this disease and carrier, or we all end up working from home and spending most of our time in bed :-( This really saddens me and make me frustrated and helpless. Hiking used to put me in the balance, but I find it hard to hike, especially in the sun and I am usually fatigued for days afterwards.
Explaining to other people what is this mysterious thing that I live with was another painful experience. People just see you looking ok and assume that you are fine (even when you hardly got up from the bed in the morning that day). So many people told me that "it is just stress - everything is in your head". Many times even doctors were reluctant and I have a phobia that they will think that I have some factitious disorder.
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