newly diagnosed

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calliope65
Regular Member


Date Joined Jul 2012
Total Posts : 43
   Posted 2/6/2013 11:49 AM (GMT -6)   
I have just been diagnosed with UCTD and would appreciate any info anyone could give me.  I did google it and found out the basics.  Please let me know any issues that you may have.  So far my biggest issue is my low platelet count.
:-)

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 2/6/2013 3:26 PM (GMT -6)   
Hi Calliope65 - sorry about your diagnosis, but welcome to the forum. I was first diagnosed with UCTD a little over 3 yrs ago. I have been on Plaquenil since then, which has helped considerably. Has your doctor prescribed any kind of treatment? Like most autoimmune disorders - there is a wide range of symptoms that can affect people in different ways and to different degrees. My symptoms line up pretty closely with Lupus.
Did you have other labs that were abnormal? Do you have symptoms of pain and fatigue? Sometimes UCTD evolves into one of the more singularly specific AI diseases - which I'm sure you're aware of.

For me, Plaquenil works very well. Doesn't get rid of all the problems, and sometimes doesn't seem as if it is doing much at all, but I tried going off it once, and it became very clear in a few weeks how much help it was truly giving me. I continue to have flares off and on, that include pain and fatigue, and sometimes mild kidney issues. I'm very sensitive to sun exposure and have recently been dealing with some GI and esophageal problems. I've had to alter my lifestyle, and acclimate to a new normal - which can be frustrating, but learning how to manage is also empowering.

I'm sure others will be along to respond. Take care and let us know how you get along.

Lucy

calliope65
Regular Member


Date Joined Jul 2012
Total Posts : 43
   Posted 2/7/2013 7:49 AM (GMT -6)   
Thank you, Lucy!
 
So far the Rheumatologist is not offering any treatment because I am not experiencing much pain.  In fact I feel very healthy for the most part. 
Yes I did have more blood tests that indicated Lupus--C3 was very low and the C4 was on the low side of normal.  I have also had low WBC's, low HGB's and a positive ANA.  Other than that I have dry eyes, dry mouth, difficulty initiating a swallow, and fatigue.  No matter how much sleep I get, I can never get enough.  All are livable complaints so I just treat the symptoms. 
My doctor has said I could go my whole life like this or it could go into remission or it could go into full-blown Lupus.  Reading a textbook about it is not quite as enlightening as hearing firsthand accounts from people that live with it day to day.  Hats off to you and any others that do because I know it can be debilitating and frustrating to live with.  I am hoping to get any words of advice that I can.
Thanks again and good luck to you!!
Janet

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/7/2013 1:02 PM (GMT -6)   
You can help the dry eyes and dry mouth by getting some moisturizers. I like systane gel tears for my eyes and Biotien for my mouth. They do sell perscriptions for these too.
You might want to be tested for sleep apnea. Sometimes that can contribute to the fatigue.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

calliope65
Regular Member


Date Joined Jul 2012
Total Posts : 43
   Posted 2/7/2013 1:24 PM (GMT -6)   
Thank you Joy!!  :-)

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 2/7/2013 3:39 PM (GMT -6)   
I was told the same thing about it becoming fullblown or remaining mild, or going to remission. For me, about 10 mos. after the UCTD diagnosis, things got bad enough that I was put on Plaquenil. I was too exhausted to shower without help and was in considerable pain daily, couldn't sleep, had UTI's and fevers. It took a some time, but slowly the fatigue improved and I just felt clearer in my head. The pain level was less affected, but the reduction in fatigue was noticeable. I was under the impression that Plaquenil was used to help keep things from progressing, so I'm a little surprised you haven't been prescribed it. On the other hand, I know lab markers can change once on Plaquenil and I think the docs like to hold off in case things will come into clearer focus for a more specific diagnosis, before prescribing.

I also had a sleep apnea test that was negative. Dry eyes and mouth are problems for me too. I like Xylimelts for nighttime, when symptoms are worse. Xylitol products help deter cavities, too.

calliope65
Regular Member


Date Joined Jul 2012
Total Posts : 43
   Posted 2/8/2013 10:20 AM (GMT -6)   
Lucy,
 
The pain was constant?  Was it all joint-related?  As far as the sleeping issue, I have had that problem for a few years so I thought maybe it was related to hormones, since I am 47.  I was prescribed Prozac which also helped some of the mood swings but mostly to help relax me enough to sleep. 
So far I have been trying to keep drinking as much as I can and i chew gum.  The dryness in the mouth isn't bad enough right now but I have had a taste of what it could be like--I had one week where I woke up with my tongue stuck to the top of my mouth.  That was a couple months ago and i haven't had that experience again, thankfully. 
But this week I have had an extremely dry nose--it hurts to go outside in the cold.  I tried saline drops, which did nothing to alleviate the dryness.  I don't know if this will continue or not but am open for any suggestions. 
 
Thanks!!!!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/8/2013 3:57 PM (GMT -6)   
For dry nose, Calliope65, try Ayr saline gel.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

calliope65
Regular Member


Date Joined Jul 2012
Total Posts : 43
   Posted 2/8/2013 8:00 PM (GMT -6)   
Thanks Joy!  I will look for the gel.  turn

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 2/8/2013 10:53 PM (GMT -6)   
calliope - I was diagnosed with fibromyalgia some years before the UCTD, which the rheumy's keep confirming by exam. Sometimes it's hard to distinguish between the two, since joints, muscles, tendons, etc all seem to be involved. I wouldn't say the pain was constant, but when it joins forces with fatigue and malaise - there is just no way to feel well, and it's harder to negotiate with the pain.

The dry mouth really flares up periodically and that feeling of having to pry your tongue off the roof of your mouth during the night and in the morning is miserable. I suppose that's what leads to the mouth sores. I use Xlear nasal spray, which really helps keep my nasal passages hydrated. I love that stuff in the pump spray. I never felt like the saline stuff helped much either. I like Refresh eye drops without preservative for my eyes.

I'm 58 yrs old - don't think the sleeping problem is related to hormones/menopause. It's always worse when symptoms flare up - better when they recede. But that's not to say that problems don't come in multiples!

calliope65
Regular Member


Date Joined Jul 2012
Total Posts : 43
   Posted 2/9/2013 3:58 PM (GMT -6)   
thank you for the information! it is very enlightening and i wish you well
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