Undifferentiated Connective Tissue Disease turning into Lupus?

Posted by pattym @pattym, Apr 24 1:22pm

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!

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.

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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

Liked by mtrapp987

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