Undifferentiated Connective Tissue Disease turning into Lupus?

Posted by pattym @pattym, Apr 24, 2020

Hi! I developed an autoimmune disorder two years ago, and have been relatively stable until now. This is my first experience going into a flare, and I'm not sure what to expect. I've spoken with my rheumatologist, and have done extensive reading, but was hoping to hear from other people with Undifferentiated Connective Tissue Disease about their own experiences with flares. What have they been like for you? How long have they lasted? And did you end up needing to take steroids, or switch medications? If so, what was that like? I had to take steroids for an allergic reaction long ago, and I could barely sleep. I dread having to take them again. But I also obviously don't want to end up with worse problems because of this autoimmune condition. In my case, I have a falling C3 level, slightly low white blood count, and some increasing symptoms. It could be pointing to lupus, but I don't have a lot of the classic blood markers and symptoms of lupus. So...I'm not really sure what to think at this point. I'd be very interested to hear about your experiences if you're willing to share!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Hi @pattym, I think you are asking a good question but I'm not sure anyone here can provide an answer for you. I did find an article on Lupus that sounds like there might be a relationship.

Lupus -- Lifestyle and Additional Information: https://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/

Have you been able to ask your doctor or rheumatologist what they think?

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Tagging @1corinthians926 @aayre @carolhastings @bunnysammy @noahs and @cinnamon215, fellow UCTD-ers to join this discussion about the progression of UCTD, and to share about their experiences with symptoms and flares.

@pattym, you may also be interested in these discussions:
- UCTD, low MCV, low MCH and low neutrophils https://connect.mayoclinic.org/discussion/uctd-low-mcv-low-mch-and-low-neutrophils/
- Undifferentiated Connective Tissue Disease https://connect.mayoclinic.org/discussion/uctd/

Patty, what medications are you currently taking to help manage symptoms?

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Thank you for your replies! (Sorry for the delay in saying so.) I'm on methotrexate and hydroxychloroquine, and have been since I developed UCTD. I guess it seems like there aren't a lot of folks in this group who have UCTD, unfortunately. Well, if any of you has any more thoughts, I'm interested. I'm definitely interested in hearing about folks' experiences with flares, especially if anyone's initially been diagnosed with UCTD that's then evolved into lupus.

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@pattym

Thank you for your replies! (Sorry for the delay in saying so.) I'm on methotrexate and hydroxychloroquine, and have been since I developed UCTD. I guess it seems like there aren't a lot of folks in this group who have UCTD, unfortunately. Well, if any of you has any more thoughts, I'm interested. I'm definitely interested in hearing about folks' experiences with flares, especially if anyone's initially been diagnosed with UCTD that's then evolved into lupus.

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Hi there,
I was diagnosed with UCTD about 4 months ago. The hydroxychloroquine and methotrexate really help, but in my case, I flare as soon as we taper the prednisone. Only ibuprofen works for the joint pain. I have bilateral joint pain in several places, but my RA bloodwork has all been negative. Negative RF. My Rheumy is wonderful. Positive ANA and diagnosis came after skin biopsy as it all started with horrible burning rashes. I feel for everyone going through this. It is horrible and there is no cure. I am an RN and recently had to get a medical accomodation at work with 4 changes due to this disease. Hang in there 🙂

Best,
Marj

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I experienced frequent flares. For me, increasing methotrexate to 20 mg once weekly has made a huge difference. Prednisone helps acute flares, but only taken for 2 to 4 weeks and then tapered.

Best,
Marj

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@mtrapp987

Hi there,
I was diagnosed with UCTD about 4 months ago. The hydroxychloroquine and methotrexate really help, but in my case, I flare as soon as we taper the prednisone. Only ibuprofen works for the joint pain. I have bilateral joint pain in several places, but my RA bloodwork has all been negative. Negative RF. My Rheumy is wonderful. Positive ANA and diagnosis came after skin biopsy as it all started with horrible burning rashes. I feel for everyone going through this. It is horrible and there is no cure. I am an RN and recently had to get a medical accomodation at work with 4 changes due to this disease. Hang in there 🙂

Best,
Marj

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Hello Marj @mtrapp987, Welcome to Connect. Thank you for sharing your experience with what helps you for UCTD. It is a great benefit to members learning what has helped other members with similar health conditions and symptoms.

I found a recent article that may interest you since you mentioned your RA blood work has all been negative.

Medical News Today, Jan 23, 2020 - What is seronegative rheumatoid arthritis?:
https://www.medicalnewstoday.com/articles/315580

Have you found any lifestyle or home remedies that help with the flares?

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@johnbishop

Hello Marj @mtrapp987, Welcome to Connect. Thank you for sharing your experience with what helps you for UCTD. It is a great benefit to members learning what has helped other members with similar health conditions and symptoms.

I found a recent article that may interest you since you mentioned your RA blood work has all been negative.

Medical News Today, Jan 23, 2020 - What is seronegative rheumatoid arthritis?:
https://www.medicalnewstoday.com/articles/315580

Have you found any lifestyle or home remedies that help with the flares?

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Hi John,
Thanks for the great article! Recently had joint ultrasound(showed no inflammation or erosion in hands). Rheumy said my dx is tricky. I have repeat lung xray next week as last one showed some scarring in R middle lobe. I have never smoked, no asthma. Home remedies that help me: heating pad, firm mattress pad on bed, hot shower in morning, and resting between tasks. I also buy Danskos only as my feet arthritis is so bad.

Marj

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@pattym

Thank you for your replies! (Sorry for the delay in saying so.) I'm on methotrexate and hydroxychloroquine, and have been since I developed UCTD. I guess it seems like there aren't a lot of folks in this group who have UCTD, unfortunately. Well, if any of you has any more thoughts, I'm interested. I'm definitely interested in hearing about folks' experiences with flares, especially if anyone's initially been diagnosed with UCTD that's then evolved into lupus.

Jump to this post

Hi I have been battling autoimmune for years and it seems like if you don’t have the actual positive ANA test the rheumatologist says no you don’t have lupus. I have researched and read many books that you can have lupus and most of the symptoms and not have a positive ANA test. I’m currently taking plaquenil/hydroxychloriquine, cymbalta, meloxicam and the 3 together seem to keep things at bay. When I do have a flare I do a round of prednisone. I also get prednisone injected into my hips which are the party of my body that suffers the worst and I do this Every 3-6 months. Extra sleep helps me during flares and learning to listen to my body so knowing when to slow down and limit activity.
Hope this helps. Joann

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Hi everyone!
I have recently joined the connect group and not sure if it's ok for me to revamp an old post from two years ago, but I couldn't find many discussions on UCTD so I thought to give it a try.
I have been recently diagnosed with UCTD, based solely on symptoms, positive ANA and good response to prednisone. I have been on Hydroxychloroquine for the past 4 months and being ok, until out of the blue, I am experiencing new symptoms. I was wondering, from people who have been dealing with this diagnosis for longer than I have, if they have ever experienced flares that started with new and worse symptoms than the before. Also, has your disease changed the response to treatment or differentiated to a specific diagnosis? I have asked this questions to my rheumatologist, but all they can say is always "it could be" or "yes it could happen", so I thought reaching out to patients might provide me with more real life experiences.
Thank you to anyone who is willing to share!

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Hello @mils ,
I have UCTD, too, about 4 years since diagnosis and on hydroxy chloroquine ever since. I occasionally have little flares of the original symptoms. I haven't done anything about them, see rheumatologist 2wce/year. He said only 20% of UCTD becomes Lupus. Had positive ANA some years ago, sometimes complements get low, and other little oddities in blood. Never had the big purple blotches on my feet again. Eyes still OK, I have a good opthalmologist watching. And, yes, 2 more autoimmune diseases+ maybe some dysautonomia.
I hope your symptoms calm down!

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