Just Diagnosed with UCTD

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KATEAWOL
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/22/2010 10:53 AM (GMT -7)   
HI all. I have been reading the posts and trying to understand what Unspecified Connective Tissues Disease really means, to me and my life.

My primary care sent me to a rhuematalogist who diagnosed me because I have speckled pattern ANA 1:80 and my sedimentation rate is 22 and that's about all I can understand from my blood work results that he copied. My biggest complaint physically is how tired I am and I feel like I get sick easier than other people. I am confused b/c he said that this could be genetic and present my whole life. Is it just now severely affecting me b/c I have 2 children under the age of four who are draining me? Or has it gotten worse (is that possible)? He said there is nothing you can do to change the ANA presence or level in your blood but he did prescribe the drug Plaquenil , that he says helps some people. So I am just wondering, can this get worse?? And are there any holistic approaches to dealing with it? Also are there any resources/forums for people specifically with UCTD? I feel very frightened by not understanding all of this and how it is going to affect my life...or on the other hand maybe I have always had it and am only now freaking out b/c it has been identified. I am a 36 year old married mom to 3 beautiful little girls (who I need a lot of energy to keep up with! ) Thanks for any understanding or advice you can give. I am obviously overwhelmed and confused.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 6/23/2010 7:35 PM (GMT -7)   
UCTD is an overlapping connective tissue disease that has not clearly defined itself symptomatically.  Most cases eventually morph into something more defined but some never do.  The only thing you can do is accept treatment to suppress your immune system and hope it normalizes.  Plaquinel is a conservative treatment that takes several months to be effective so you have to give it time.  Your symptoms sound pretty mild so far.  Do not ignore new or increased symptoms.  You might require more aggressive treatment for a time. 
 
 
 
The above links might give you a better understanding to these mysterious diseases. 
 
Hope your treatments kick in soon.  I can't imagine being the mom of 3 young kids and having something like uctd.
 
Bill
 
PS - there is nothing specific about uctd but the treatment is the same as for more clearly defined diseases
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.


KATEAWOL
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/25/2010 10:48 AM (GMT -7)   
Bill, thank you for replying. Any information is so helpful, I was getting discouraged that no one was answering my post, as it is my first time on this forum and also trying to understand my new predicament. I am so grateful.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 6/25/2010 11:23 AM (GMT -7)   
You are wrestling to understand auto immune diseases like all of us did at first.  They are not like other diseases and patients often have more than one.  The nature of an immune system gone crazy makes it difficult to predict how any case will progress and uctd is a catchall diagnosis when they know you have it but the symptoms are not clearly defined.  MCTD is clearly defined but if you have read some of the posts many doctors are not clear on what it is. 
 
Hang in there and hope your treatment will work but don't be surprised if you need more aggressive treatment.  In the meantime remember that you are sick and try to cut back on your activities and stress if you can.  As the father of 4 grown kids I know how hectic it can be in a young family so it is easier said than done.  Enlist your husband to help as much as he can. 
 
These diseases are usually treatable but some cases are more stubborn than others.  I have gone from a quadriplegic state in Dec 2005 to an active life again.  Just finished playing golf (not very well) and carrying my own bag for 9 holes.  I ski and work out several times a week and life is good again but in my case which was very extreme and unusual it was a long battle.  Take things a day at a time and don't project into the future.  My time frame when things were really bad was 1 hour and somehow I got through the nightmare. 
 
Good luck,
 
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.


ILgirl
New Member


Date Joined May 2010
Total Posts : 4
   Posted 6/25/2010 12:26 PM (GMT -7)   
KATEWOL,
 
Welcome!  I have also been diagnosed with UCTD and I am struggling to understand this disease just like you.  I have been dealing with the extreme fatigue you describe as well.  I have been on Plaquenil since February and I am happy to say that my joint pain and fatigue are finally decreasing.  I took about 3 months and gradually I noticed I was feeling better and better.  It's a bit of a roller coaster, I never know exactly what to expect next!  Please know that there are a lot of people here that feel just like you and are always happy to give advice and comfort. tongue
 
Cathy
DX:  UCTD (2010), Asthma/Allergies
Meds:  Plaquenil-400 mg, Mobic 15 mg, Advair, Xyzal


Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 6/25/2010 2:31 PM (GMT -7)   
Welcome to the board...
I don't know anything about what you have been DX with.. Just wanted to say I hope you are better soon... and say welcome...

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 6/26/2010 8:26 AM (GMT -7)   
May I suggest you read THE LUPUS BOOK By Dr Wallace? I know you have UCTD but it might be helpful especially since he includes a list of homeopathic treatments and what they do. Also, If I recall correctly UCTD shares some symptoms and treatments with lupus. I am sorry you are dealing with this and hope you feel better sooner rather than later on the plaquenil. Also please be aware ANA levels will change from day to day hour to hour and lab to lab so it is not something to use to gage your disease activity just something to help in dxing you.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


nolatoco
Regular Member


Date Joined Jun 2009
Total Posts : 66
   Posted 6/30/2010 3:29 PM (GMT -7)   

Hello!  Welcome!

I share the diagnosis of UCTD with you.  I was diagnosed a year ago.  I presented with joint pain, extreme fatigue after a horrible case of shingles a couple of months beforehand.  I have always gotten sick easily, and have dealt with the fatigue for years before I was diagnosed.  My ANA was 1:320 and my CRP was elevated.  My disease hasn't differentiated itself yet.  Although, my rheumatologist  feels that lupus will present itself at some point (not sure why she chose lupus, but that's the way she feels). 

I was on Prednisone for a year and just recently was able to taper off completely.  I'm on Plaquenil which took a while to help but does help.  I can tell after a couple days of forgetting, so I know it's working for me to some extent.  After continuing to have the extreme fatigue and my rheumy putting me on Wellbutrin for energy (to no avail) they decided to run thyroid tests and I now have the new diagnosis of hypothyroidism as well, which my rheumy has said is also auto-immune related.  I finally am feeling up to par again-- hoping to stay that way since my big move back to New Orleans is in two weeks!

I can understand being fearful and overwhelmed.  I am a single mom of a 9 year old girl and I have no choice but to remain working full time.  My best advice is to give yourself rest periods.  On weekdays that I work, I come home, cook dinner, and clean a little bit before putting myself to bed at the same time as my daughter.  I feel that the extra sleep helps me since I'm on my feet all day long at work for 12 hours.  On days off, I make sure to do something special and fun for my daughter but I allow rest periods- she may watch a movie while I rest.  Rest is very important!  My mom has always told me not to burn the candle at both ends and with this disease that's very important- that will foretell how you feel in the future.

Keep posting and reading on here.  Although I don't post as often as others, I read this a lot so I can see what others are going through and what advice everyone gives.  It's a great comfort to be surrounded by people that know what you're going through- even though it's only online.

Keep your chin up!


Diagnoses- Hypothyroidism 2010, UCTD 2009, ovarian cysts 2008, asthma 2001
Daily Meds- Plaquenil, Vitamin D, Wellbutrin, Synthroid


KATEAWOL
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/30/2010 6:46 PM (GMT -7)   
Thanks to everyone for your responses. Are there any vitamins that seem to help with this? Also, how do you tell what a ANA rate should be- I mean what can you tell from 1:320 versus 1:80? What does it mean? I don't think my doctor really explained any of this well. What is CRP? So glad I found this forum since I am clueless. Thinking about going to another Dr. just to get another (better) explanation.

I feel more tired than ever and wonder if it is just psychological since I have been diagnosed! I guess I am grateful that nothing else has presented yet. But apprehensive about the future. I am taking the plaquenil and will see what happens. I don't have bad joint pain. Just wondering if the you all experience more joint pain when exercising or not? And does exercise help you or wipe you out completely? Oh, and not that it matters but, I am not sure why I said I have 3 girls, I only have 2! But they still are handfuls at 18 months and 4 1/2 years old. But worth it!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 6/30/2010 7:21 PM (GMT -7)   
You might want to do some reading at www.lupus.org to find out what some of these things mean and what you might expect.

ANA titers-- higher 1:320 is supposedly worse than lower 1:80. But they go up like this 1:80, 1:160, 1:320, 1:640, etc. I say supposedly because in truth your symptoms may or may not fluctuate with the ANA reading. That is, you could have more symptoms but a low ANA, or a high ANA with fewer symptoms, it just varies by individual.

Most important is that your symptoms are being treated...this can and should be done regardless of diagnosis!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

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