UCTD

Posted by bunnysammy @bunnysammy, Jul 31, 2018

Hey everyone! So if you've seen my last post you know I've been in the process of diagnosis. I'm still not 100% but my Rhuemy is think Undifferentiated Connective tissue disease which is not the same as Multiple connective tissue disease. I was wondering if there's anyone on here who has this? I don't see much awareness for this disease or much information. I see a lot of mixed info so I'd love to hear experiences, explanations, like anything and everything that anyone knows about this. Thanks guys.
So if I do have UCTD mine presents itself very similarly to lupus and RA with some Sjorgens similarities too. So one step closer to diagnosis:)

Hi @bunnysammy — I did a search of Connect for the term UCTD by going to the top of the window and clicking on the search icon (small magnifying glass) and typing UCTD. It came up with several discussions that you might want to look at — your post above is the first one listed:

https://connect.mayoclinic.org/search/?search=UCTD

John

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@johnbishop Thank you.
It's crazy.. there's only 2 discussions actually on UCTD and no one seems to really know what it is. MCTD seems to be understood more… from my understanding if I'm diagnosed with UCTD it's because I have Lupus and RA symptoms with some blood test markers of both but the tests aren't conclusive enough… but treatment is the same as lupus. Strange to me. Ive found no foundation and almost no awareness on this disease at all..

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@bunnysammy

@johnbishop Thank you.
It's crazy.. there's only 2 discussions actually on UCTD and no one seems to really know what it is. MCTD seems to be understood more… from my understanding if I'm diagnosed with UCTD it's because I have Lupus and RA symptoms with some blood test markers of both but the tests aren't conclusive enough… but treatment is the same as lupus. Strange to me. Ive found no foundation and almost no awareness on this disease at all..

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Hi @bunnysammy — I usually go to Google Scholar (https://scholar.google.com/) when I'm trying to find some in depth information or studies on a medical diagnosis or research papers. I'm no medical expert and have no training but I think the term undifferentiated connective tissue disease (UCTD) is similar to use of the term idiopathic for a diagnosis that's not specific. Here are a few articles I found using Google Scholar.

Quality of life in patients with connective tissue diseases: results from the Lupus Extended Autoimmune Phenotype (LEAP) study
https://academic.oup.com/rheumatology/article/57/suppl_3/key075.351/4971252

High burden of immunosuppressant use in undifferentiated connective tissue disease: results from the Lupus Extended Autoimmune Phenotype Study (LEAP) cohort
https://academic.oup.com/rheumatology/article/57/suppl_3/key075.346/4971247

PS8:154 Therapeutic and cardiovascular disease burden in undifferentiated connective tissue disease and systemic lupus erythematosus: results from the lupus extended autoimmune phenotype study (leap) cohort
https://lupus.bmj.com/content/5/Suppl_1/A112?utm_source=trendmd&utm_medium=cpc&utm_campaign=lsm&utm_content=consumer&utm_term=0-A

John

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Yep I have this to just got diagnosed and have no clue just as I went in with no knowledge of what I have I come out with this uctd and leave not knowing anything either lol what a joke:'( basically they don't know what we have because our blood work and everything is pretty good but our bones and joints are facing apart and we are in at of pain obviously something is happening they just don't know what it's sad and exausting file me just like I'm sure it is you I know how you feel it's awful: (

Liked by cinnamon215

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I have UCTD and have been taking hydroxychloriquine for approximately 9 months. I really can't complain; the drug has prevented me from getting flare-ups which were extremely painful. So far, so good! I only need an Advil or Over-the-Counter pain pill for mild discomfort wherever it hits (have had flare-ups in my hands, wrists, neck, sternum). I'm 72; active, but my biggest aggravation is fatigue. I wish there was a pep pill for that (but would rather deal with constantly feeling tired than taking steroids). Most physicians will suspect depression (and I"m not depressed). I sleep more than most, but can resume my 90-mile per hour pace once I'm in an, "upright position." Hope this helps.

Liked by cinnamon215

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Hi Everyone, I am new to Connect. I was diagnosed with UCTD in 2009. I have also been taking hydroxychloroquine (Plaqunil) since that time. My dr added Meloxicam after that which I took along time. Like many have said my Dr also told me UCTD is kind of the umbrella over Lupus, RA, and Sojourner because you have a little bit of all three but not enough of one that would put you in the category for that disease. He also said if my blood work didn't change much in 5 yrs it's likely it won't get worse. I still have flareup's of pain in joints and muscles and have tried other meds that they use for Fibromyalgia but I haven't found anything that works well. Celine helped but then my gut couldn't Handel any longer. I too have really been dealing with fatigue because of not sleeping well. My muscles just hurt from pressure of laying on them thru the night. So still looking for answers too.

Liked by cinnamon215, noahs

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Hello @lilbitlestie, @carolhastings, and @jsreible — welcome to Mayo Clinic Connect. I know it's hard when you think you are all alone so I am really glad that the three of you recently joined this discussion. I'm hoping you will be able to share treatments, ask questions and learn more about your condition. I think the more we learn about our health condition, the better questions we can ask our doctors and hopefully come up with a better treatment plan.

I found the following information that may be helpful for learning a little more about UCTD.

Undifferentiated Connective Tissue Disease – In-Depth Overview
https://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp

Undifferentiated connective tissue disease
https://rarediseases.info.nih.gov/diseases/12342/undifferentiated-connective-tissue-disease

@bunnysammy how are you doing with your diagnosis? I'm wondering if you might have any information to share with @lilbitlestie, @carolhastings, and @jsreible.

Liked by cinnamon215

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Thanks!

Thank You (Dog)

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@jsreible

Hi Everyone, I am new to Connect. I was diagnosed with UCTD in 2009. I have also been taking hydroxychloroquine (Plaqunil) since that time. My dr added Meloxicam after that which I took along time. Like many have said my Dr also told me UCTD is kind of the umbrella over Lupus, RA, and Sojourner because you have a little bit of all three but not enough of one that would put you in the category for that disease. He also said if my blood work didn't change much in 5 yrs it's likely it won't get worse. I still have flareup's of pain in joints and muscles and have tried other meds that they use for Fibromyalgia but I haven't found anything that works well. Celine helped but then my gut couldn't Handel any longer. I too have really been dealing with fatigue because of not sleeping well. My muscles just hurt from pressure of laying on them thru the night. So still looking for answers too.

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I have been on hydroxychloroquine for approximately 8 months and it really helps. Had painful flare-ups prior to taking the drug (the locations varied; hands; wrists; collar bone; neck). No need for steroids since taking the hydroxychloroquine; just Advil or Aleve on days I can tell my immune system is trying to give me a flare-up. I guess I'm grateful that this is a pretty mild diagnosis to have at age 72 (compared with more serious illnesses). I'm active; exercise regularly; only drink "on occasion;" basically grateful that I'm in as good a shape as I am. Just wonder if anyone else has days when it's really hard to get up without an inordinate amount of sleep? Once in an "upright position," I'm rather hyperactive. That being said, there are days when I almost feel "drugged."

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@jsreible

Hi Everyone, I am new to Connect. I was diagnosed with UCTD in 2009. I have also been taking hydroxychloroquine (Plaqunil) since that time. My dr added Meloxicam after that which I took along time. Like many have said my Dr also told me UCTD is kind of the umbrella over Lupus, RA, and Sojourner because you have a little bit of all three but not enough of one that would put you in the category for that disease. He also said if my blood work didn't change much in 5 yrs it's likely it won't get worse. I still have flareup's of pain in joints and muscles and have tried other meds that they use for Fibromyalgia but I haven't found anything that works well. Celine helped but then my gut couldn't Handel any longer. I too have really been dealing with fatigue because of not sleeping well. My muscles just hurt from pressure of laying on them thru the night. So still looking for answers too.

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Hi. I was diagnosed Undiffetentiated Mixed Connective Tissue Disease
Or UMCTD last June 2018. As my doctors explained I have a little of several autoimmune illnesses like lupus, RA, Etc… but primarily now
My immune system is attacking my
Lungs. I am on steroids and
Immunosuppressant drugs. They are trying to taper
My steroids but
Unfortunately I have a flair up every time. Like today I have a full
Blown asthma bronchitis infection caused
By my immune system attacking my lungs bec of the tapering . It’s a tedious slow process … tapering of steroids. And yes “undifferentiated “ is same as “idiopathic”.

Liked by cinnamon215

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Hang in there and I hope you can get off the steroids. So far, my hydroxychloroquine keeps my flare-ups "mild" (before I got on this, the pain was quite severe).

Liked by cinnamon215, noahs

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Hello, I have UCTD recently diagnosed to add to my list of AI diseases.. I have Rxs for Plaquenil and lowest dose anti-depressant for pain. I sleep 11 hours each night and would sleep longer if my little dog didn't wake me for potty. I am as active as I can be and eat well but I still fight fatigue. I have hit a plateau and sometimes I wonder if it will ever get better.

Liked by cinnamon215

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@cinnamon215

Hello, I have UCTD recently diagnosed to add to my list of AI diseases.. I have Rxs for Plaquenil and lowest dose anti-depressant for pain. I sleep 11 hours each night and would sleep longer if my little dog didn't wake me for potty. I am as active as I can be and eat well but I still fight fatigue. I have hit a plateau and sometimes I wonder if it will ever get better.

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Hi @cinnamon215 — I found a few links that might be helpful for members with a UCTD diagnosis.

What Does It Mean to Have Undifferentiated Connective Tissue Disease?
https://elizabethbarone.net/what-does-it-mean-to-have-undifferentiated-connective-tissue-disease/#

Cindy: Undifferentiated Connective Tissue Disease (UCTD)
https://sclero.org/scleroderma/support/stories/english/c/cindy/a-to-z.html

Heidi's Story:Difficult Diagnosis of UCTD – Sclero.org
https://sclero.org/scleroderma/support/stories/english/h-i-j/heidi/a-to-z.html

Liked by cinnamon215, noahs

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How nice of you, John! Thanks so much!

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@johnbishop

Hi @cinnamon215 — I found a few links that might be helpful for members with a UCTD diagnosis.

What Does It Mean to Have Undifferentiated Connective Tissue Disease?
https://elizabethbarone.net/what-does-it-mean-to-have-undifferentiated-connective-tissue-disease/#

Cindy: Undifferentiated Connective Tissue Disease (UCTD)
https://sclero.org/scleroderma/support/stories/english/c/cindy/a-to-z.html

Heidi's Story:Difficult Diagnosis of UCTD – Sclero.org
https://sclero.org/scleroderma/support/stories/english/h-i-j/heidi/a-to-z.html

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Hi John. Thank you for the links you shared re UCTD … they were all informative.

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