Is UCTD the same as Lupus?

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Xsy1627
New Member


Date Joined Mar 2010
Total Posts : 5
   Posted 3/12/2010 3:45 PM (GMT -6)   
Hi! I just discovered this forum today and signed up right away! I am a married 28 year old mother of 3 year old twins and a 3 month old. My rheumatologist told me today she thinks I have "some sort of connective tissue disease," and wants to put me on medication but I am uneasy about taking meds for something that doesn't have a definitive diagnosis. And now seeing so many posts about UCTD under Lupus...I'm confused. My ANA is 1:1280 and I have some inflammation. Other than that all of my blood tests are normal. Am I just waiting for other symptoms to surface? Is my current condition as bad as it will get? Will I ever feel 'normal' again? This is such an emotional roller coaster and I feel like I am falling apart. Can anyone offer any understanding or support? I feel so alone.

Post Edited (Xsy1627) : 3/12/2010 3:55:21 PM (GMT-7)


FW
Regular Member


Date Joined May 2007
Total Posts : 439
   Posted 3/12/2010 8:52 PM (GMT -6)   
Welcome! I just typed a whole response and lost it somewhere so I will try again.

First off congratulations on the new baby! And twins, too - you are triple blessed! That said, I imagine that you are exhausted and overwhelmed!
Enjoy them, though. You will be surprised how quickly they grow!

Believe it or not, you may have lucked out on your first try with a rheumy.

My symptoms were identical to yours and it took two years and 5 doctors before I had someone other than my PCP diagnose "connective tissue disease". I started plaquenil in 2002 and it took a few months but did make a big difference. By 2004, I decided that I didn't need the plaquenil any longer, and I stopped taking it. Big mistake. The symptoms returned and were worse than ever. At that point it was determined that I had SLE (lupus) and Sjogren's Syndrome.

Yes, it can get worse but sounds like you were diagnosed early. With the proper medications and some precautions (no excessive sun, getting extra rest, etc.) you can and will feel "normal", again.

Please visit this board as often as you need to and ask questions or vent/scream/whine! This is an incredibly supportive and caring group of people.

There is an incredible amount of information on the internet about MCTD and UCTD. It is a lot to try and absorb at once. Take your time. You will be fine. Enjoy your babies!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1207
   Posted 3/13/2010 11:03 AM (GMT -6)   
UCTD (undifferentiated connective tissue disease) and MCTD (mixed connective tissue disease) are overlapping connective tissue diseases and often include lupus.  MCTD is defined as lupus, scleroderma and polymyositis.  UCTD is usually noted when there is not a clear indication but there are symptoms of more than one AI disease.
 
 
 
 
I have mctd but polymyositis was the main problem for me followed by lupus.  Scleroderma fortunately was pretty quiet and hope it stays that way.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


Xsy1627
New Member


Date Joined Mar 2010
Total Posts : 5
   Posted 3/13/2010 11:20 AM (GMT -6)   
Fran and Bill,
Thank you so much for your information and kind words. I got a call from my doctor yesterday, she wanted to put me on prednisone, but had to talk to my GI doctor (they work in the same office) before prescribing because I have an ulser in my colon and it flares up with anti-inflammatories. I am suppose to be taking Pantasa for it, but decided not to because I can't take it while breastfeeding and my GI doc is not comfortable with me taking prednisone without taking the pantasa. After talking for a while she decided to prescribe Paxil (paroxetine), which is an antidepressant, hoping it will help with the pain as well. Have you heard of this? I have not started taking it yet and would like to get some opinions. Thanks!

FW
Regular Member


Date Joined May 2007
Total Posts : 439
   Posted 3/13/2010 12:08 PM (GMT -6)   
Hello, again! And you are welcome. I am allergic to all anti-inflammatory medications so my doctor (PCP) prescribed Prozac back in 2000 to try and help with the pain. I am very sensitive to many meds and this hasn't bothered me at all. The Prozac does help me to manage the pain much better. I still take it daily. One of the difficult things for me has been adjusting to the fact that I will have to be on meds for the rest of my life. But I am determined to enjoy my life: hubby, kids, and grands and if I have to take meds to help with that, then I will.
Prednisone is one of my as needed meds. Both my allergist and my rheumatologist will prescribe it if I start to flare. Usually I do a taper, large amount of pred for a few days, then less each day until I am back off it. This gets my immune system back to normal (for me, lol). Many people on this board take pred daily (in as low a dose as they can).
I have GERD and Celiac, and I see a gastro doc for that. Right now I take Aciphex and Zantac, that has kept the digestive issues and stomach pain much more tolerable.
I am not sure about what breastfeeding issues you might have to deal with as far as taking medications. I would think that as long as the doctors feel it won't harm the baby, then it should be fine. Pred does do a great job at getting a flare under control, so if it won't hurt the baby, it might be worth it.
Remember, you will get through this. One day at a time. Have fun with your little ones and relax. As we "older" folks know, these things all work out!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


Bethyj
New Member


Date Joined Aug 2010
Total Posts : 1
   Posted 8/21/2010 6:36 PM (GMT -6)   
Hi~~I have just recently been diagnosed with UCTD after 10 years of being misdiagnosed and have been suffering through severe pain, migraines, loss of vision and so on for the past year. I am now starting my second month of Plaquenil and have some relief from the symptoms. Up until November of 09, I was an avid runner, but I caught the H1N1 virus and was down for 5 weeks and never fully recovered. Caught another illness in April that ended up putting me in the hospital. Platelets dangerously low, dangerously low wbc etc. Ended up back at my Oncologist to run a battery of tests (again) including a bone marrow extraction. My bone marrow had problems with it to. After another round of blood work (18 tubes) my rheumatoid factor was extremely high. Finally I am with all the right doctors. My question is, are any of you able to work out since being diagnosed. I miss running and exercising, even though I am no where near ready for that. I am looking to the future and with great hope in becoming active again. Also, do you have flare-ups? I figured out that when my shoulder blades and my neck hurts, I will have a migraine within 24 hours. Any hope would be appreciated.
Thanks,
Beth
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