Undifferentiated Connective Tissue Disease turning into Lupus?

I have been on hydroxychloroquine and methotrexate for six years. Basically, my symptoms are 80-85% better, but I do occasionally have little flares. My flares are not new symptoms, though. Unfortunately, with a rare condition like UCTD, nobody knows what to expect. I think of UCTD as pre-lupus. We can cross that line anytime. Reassuringly, though, the majority of us do not go into lupus. Maybe you need a new or additional medication. Tell your rheumy that hydroxychlorquine isn't working well enough. What are the new symptoms that you are experiencing?

Hi @patyrod , thank you for reaching out! My symptoms started with rib cage pains and collar bone pains, always felt as someone was stabbing me in the ribs or pressing something on my chest. Two weeks ago however I woke up with a terrible stabbing pain in my shoulder blade, I believe right where it moves. Laying down on laying my back on something made it worse, moving it too much also was bad. I took prendisone for three days, plus some Advil and put some icy/hot gel on the area and it slowly got better. I also had for two days some terrible pain in my hip (same side of the shoulder blade pain) which went away and never came back. As of right now, my shoulder still hurts sometimes, not sure if it is related to uctd or I just injured it somehow.
As for you, my symptoms are much better with Hydroxychloroquine, so I am trying to identify what caused this flare up. The only thing I can think of is I have been under a lot ot stress since end of june, which ended exactly the week before my pain started again.

I can correlate autoimmune body pain, symptom flares. and terrible malaise with increases in emotional stress.

Hi!! There are so few other UCTD diagnosed people out there! And we all sound so different in our symptoms…

Since this is (I think? I’m having a moderate to high brain fog day) the first UCTD specific message string I have seen, I wanted to ask if anyone has noticed any correlation between autoimmune flares and minor illnesses?

Hi Mary, Could you describe what exactly UCTD is? How were you diagnosed?

Hi patty
Several years a top rheumotologist in NYC diagnosed me also with UCTD - other rheumotologists have called it Fibromyalgia, Chromic fatigue syndrome and Poly Myalgia Rheumatica!
However , the treatments are all the same as well as the symptoms !
My NYC rheumatologist explained to me that his diagnosis is such because i have a few markers for lupus, a few for rheumatoid arthritis etc ! But not enough in either category to make it a distinct diagnosis .. therefore the term “undifferentiated …”
When i do get a flair , I’m fairly miserable and just get out of bed to shower or eat , but it’s with great effort.. there have been several times over the last 10 years where i had no option but to go on prednisone due to horrific pain in upper chest and entire rib cage .. “ costrochrinditis it’s called and is very painful. The prednisone does help with that though..
I have tried Plaquinol but am unable to tolerate it ..
So on days when the “whole-body” pain is really bad , i resort to 1/2 Vicodin ,2 Advil plus .025 Xanax
That combo often helps me out of the bad pain cycle for a few hours ,. However if flair is really bad, it doesn’t help
Often by next day or 2 I’m out of the temporary flair which often comes about post-exertion.. ( did too many errands day before!)
It’s really a “ bit ch” this illness and has created an isolated life style for me which is opposite of my personality!
I am presently on 60 mg of Cymbalta - raised up from
40 mg 2 months ago
However, i believe the additional 20 mg has affected me in not having the energy needed to visit family or friends.. it’s a NO -WIN situation
Good luck to you Patty
Lynda L

Lyndal0502 - Just to clarify is that ‘costochondritis’? Yes it is quite painful.

YES/ I’m sure i spelled it incorrectly and believe your spelling is correct
It can be an extremely painful condition and can often take time to go away
However- the prednisone does seem to help alleviate it somewhat
Lynda L

Ah! I wrote a bunch back in April and I’m going to refer you back to these posts.
https://connect.mayoclinic.org/discussion/undifferentiated-connective-tissue-disease/
UCTD is an autoimmune disorder where you have signs and symptoms of other “defined” connective tissue diseases, but not enough signs or symptoms to be diagnosed with one of those. So we’re this rag-tag group of people with “autoimmune-y” symptoms that just don’t fit a different category. Our symptoms aren’t the same, and most of us don’t get severe organ damage (because then we’d get diagnosed with something else, ha!), but when studies finally looked at quality of life, not surprisingly it was… not good. Maybe all the uncertainty about what’s wrong with us and whether we will get better or worse and whether we will wake up feeling good or bad or in between- kind of the nature of living with an autoimmune disorder.

I’m going to answer my own question here- turns out what I thought was a cold developing was really just a nasty flare up of my GERD- my throat and ears and dry cough were all just my reflux. So, my fatigue flare might have had nothing to do with a “cold” per se. But, gonna get my reflux under control again! Ordered my favorite Gaviscon Dual Action from the UK off Amazon and will get the throat feeing better in no time.