Any advice please re: lips curling in & mouth tightening. Anybody know if laser therapy helps? Have UCTD, raynauds & positive ANA's. Thanks

[Pipp]

Hello all,

I am being treated with hydroxychloroquine for UCTD, only been taking it 5 months so far and was hoping it could calm symptoms and slow down the skin tightening. (Which started 2 years ago). No matter how much facial exercise I do, my skin seems stubborn to fully move itself - a horrible feeling. I even use a paraffin wax treatment daily to warm & soften it; the worse thing is the soreness at the corners and where lips curl in - talking and eating is difficult at times.

So if anybody has any ideas or have had meds that seemed to slow down the tightening I'd be most grateful. Thanks for reading, think I rambled a little ..

[nettie545]

So sorry this has happened to you. It must be very difficult. I had mouth and genital ulcers at one stage, and my lips tightened from holding my mouth still because of the pain, so I know how sore the corners get. I can't offer any suggestions I'm afraid. Could you explain to me what UCTD and ANA'S are? I've never heard of it! Is the skin tightening from Raynaud's or one of the other conditions you have? Hope you feel better soon and find something to help. Have you contacted the Raynaud's and Schlerdoma Website to ask about the skin tightening? They might know how to help.

[Pipp]

Hi nettie545,

Thanks for replying and sorry to hear that you've had a tough time of it too. UCTD is undifferentiated connective tissue disease meaning that I'm showing symptoms for several autoimmune connective tissue diseases, just not enough criteria for a particular one (at the moment). Lupus, scleroderma and sjorgrens have been suggested by the rheumatologist. Also vasculitis. ANA means antinuclear antibody blood test to help screen for autoimmune disorders. The skin tightening seems to be due to scleroderma, the raynauds is less of a problem as controlled with meds. I will ring the RSA, they may have some ideas. Thanks

[Hidden]

Hi Pipp - I am sorry you are having this symptom - it is one of the ones I fear getting myself having always suffered from very tight, dry, sore skin (but paper thin rather than hard and thick). I also have self-diagnosed UCTD although I have a diagnosis of RA and my GP is treating me for Sjogrens and Raynauds symptoms. I have just been referred for a second opinion to a man who specialises in connective tissue diseases including Vasculitis, Lupus, Scleroderma and RA.

My ANA is borderline negative so my own rheumatologist can't quite bring himself to diagnose me with anything else apart from RA which is rather frustrating - as I currently have symptoms of lots of other things but not of RA! I too have a tight, sore mouth and it is particularly annoying just now - so I know that it isn't the same as mine is due to some kind of dermatitis I believe (also waiting to see a dermatologist!) but you do have my sympathy.

Just a thought - has it been suggested that you take an immunesuppressant such as a low dose of Methotrexate as well as Hydroxichloraquine? If symptoms of Scleroderma are starting to manifest themselves in this way I think you should ask your consultant or ask your GP to refer you to a specialist in connective tissue diseases if your rheumatologist is overly cautious - as mine seems to be.