More people with UCTD out there?

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themonsterinmybelly
New Member


Date Joined Aug 2013
Total Posts : 2
   Posted 6/6/2014 10:13 AM (GMT -6)   
Hi all,

I’m so happy I found this forum!

Let me introduce myself properly.

I am an 39 years old woman and happily married since 2008.
Unfortunately I have also been sick since almost 3 years and this has caused a significant reduction in my and my husband’s quality of life. Since approximately 1.5 years, I can only work or do other things for up to 4 hours a day of work. (Ski) holidays, sports, going out, all there is no longer in it for me. Before I got sick I was very sporty, a workaholic and I was sometimes called a bouncing ball in terms of energy ;-)

Since my symptoms started I got in the medical rigmarole and slowly, after several nasty bowel examinations, many MRIs, CT scans, and even a PET-FDG scan, two laparoscopic belly surgeries and hospital stays the puzzle pieces start falling in place, but we still are not there. Moreover, the results of my blood tests are always good (except ANA and ANCA), my CRP is usually good and sometimes very slightly elevated, vitamins etc all fine, blood tests for specific autoimmune diseases such as lupus are negative.

Here is an overview of my confirmed illnesses, the complaints I have and the possible diagnoses that are there now.

I just got diagnosed with undifferentiated connective tissue disease ("UCTD") by my rheumy and just started Plaquenil (200mg/day). I’m full of questions about UCTD and would like to hear if you guys recognize my symptoms as UCTD or being more likely another autoimmune disease, and how you manage to live with UCTD, which medicines et cetera.

Confirmed diseases / disorders / findings:

 migraine
 malfunctioning pancreas (I take pancreatic enzymes for digestion)
 subfertility, childless since 2008
 chronic sinusitis
 midcarpal instability (initial diagnosis was Sudeck’s disease)
 little inflammation in my small intestine and canker sores in my mouth (first diagnose was IBS, then Crohn’s disease and now unknown)
 lactose intolerant, not very tolerant to wheat and gluten, potato allergy
 slight wear in low back and neck (MRI of brain and spinal cord was made after suspected MS)
 at various blood tests very high ANA (after very high titration over 1/1000) and positive ANCA.

Complaints:
 daily (and sometimes nightly) abdominal pain. Varies in intensity from aching, stabbing / flashing, cramping and colic to almost intolerable. Therefore, I only wear sports trousers with soft band or dresses.
 daily fatigue. Regardless of how much I take rest, as if your body still has to recover from one or more marathons. Fatigue can come suddenly in one fell swoop over me, I'm in a blow violently sick. Then I must find my words, talk without articulation and have a sense of thick tongue. A few times I feel as I don’t get enough oxygen and that's scary. Especially if I get it hot I get very very tired immediately.
 Fatigue over the past few months also shows as muscle weakness, strongly acidified muscles after slight exertion and muscle stiffness. Long recovery time (one week). Muscle weakness and stiffness, especially in upper legs / thighs / hips (resulting in sagging legs, drunken walk / lameness) but I also feel like this when I hold my arms high for half a minute and I also feel that I have much less strength in my hands than before ( f.e. opening a can or a bottle is not as easy as it used to be).
 low back pain and stiffness after about an hour of walking or standing (this is the only complaint I have since I was 15), stiffness and pain than forces me to lie or sit down .
 Sometimes inflammatory pain in fingers and knees, but only for some hours or a day, then it disappears.
 I have very often a slight increase in temperature (37.7-37.8 degrees Celcius, ear temp.)
 defecation and micturition, and often much, sometimes slightly incontinent, often abdominal pain.
 unwanted loss of approximately 18 kilograms in a short time (now weigh 58 kilos with 1.75mt length) and can no longer gain weight.
 Uterus / menstruation. Week and a half bedbound by heavy menstrual cramps and other abdominal pains (and despite Feminax and tramadol), moving in bed is very painful, toileting is then very painful and the first days I often have bloody stools. Nauseous and vomiting. Often large blood clots. Since one year I take two contraceptive pills a day (with one pill keep bleeding for months) and it seems like the amount of bleeding is diminished. Despite pills I often have some spotting and I get after about 2.5-3 months a breakthrough bleeding, and then I let it come through as a stop week. Outside the period I have often uterine cramps only less severe.
 Since about two months I have had 7 attacks of vertigo and had been violently sick (this does not bother ears). Attack is severe, I am drawn to the ground (ergo I fall) and hours after I feel sick.
 My blood pressure is often quite high sometimes 170 or 140-150 over 90-100. I started measuring after my first vertigo attack.
 Very often sore throat and often laryngitis.
 I get any infection anywhere.
 Very light sensitive and dry eyes (Schirmer test showed no problem) and quite dry mouth (feel it mostly when trying get to sleep and after waking up).
 I cannot eat normal sized meals anymore because I feel sick right away and get abdominal pain.
 After some sun I get red rash on the cheeks and nose bridge, and recently also on my chin.
 Very bad skin, poor wound healing (the wounds of last laparoscopic surgery were closed almost after three weeks, my GP tried removed the sutures after two weeks...was not a good idea), I easily scratch and bruis, I have white pigmentation on lower legs and stretch marks on upper and lower legs. Skin biopsy yielded nothing.
 Rarely get nerve pain in my face and arm. Almost daily small (not painful) muscle itches, mainly in my upper legs (mainly right leg).
 I had an eye inflammation recently (general antibiotics helped) and my right eye upperlid slightly fell but this disappeared after some time.
My fingers cannot stand cold anymore. Even when I wash my hands in warm water during summer they hurt. Getting something from the fridge is almost impossible. Warming up takes hours (my feet have the same problem) and they turn red and blue but not white and also not in the Raynaud's sequence.
 Vertical grooves in some fingernails (capillary test showed only many small hemorrhages) and sometimes I have strikingly visible capillaries on the inside of my fingers.

Possible additional diagnoses that have been suggested by doctors:
 Adenomyosis (kind of endometriosis in the uterus). Endo outside the uterus is ruled out by laparoscopic sugeries in 2011 and 2014. In 2014 some adhesions were removed.
 Whipple's disease, a very rare systemic bacterial infection. An intestine biopt is now being tested.
 Maybe Crohn's disease is back?


Kind regards and lots of strength to everyone!

Hugs,
Patricia

Post Edited (themonsterinmybelly) : 6/6/2014 1:13:31 PM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/6/2014 1:48 PM (GMT -6)   
Wow, you have a mess of a problem.
I hope the doctors can get you better.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 6/6/2014 8:59 PM (GMT -6)   
Hello Patricia--and welcome!

You might want to use the Search bar, at the top of the page, to look for UCTD posts. I'm pretty sure I've seen UTCD comments.

Best wishes--
Jan
“Courage doesn't always roar.
Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.'"
- Mary Anne Radmacher

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/10/2014 8:06 PM (GMT -6)   
I'm so glad I take my plaquenil. I started feeling better around week three taking it.

I really helped me feel better.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 6/11/2014 7:35 AM (GMT -6)   
Hi monsterinmybelly and welcome :)

I have been diagnosed with UCTD/lupus and recognize many of your symptoms. Plaquenil takes a while but it really helps myself and others.

Slowing down has been an adjustment for me. I'm newly diagnosed as well and still getting used to all this. I have faith we will all find our "new groove". :)

My sister has that adenomyosis or whatever. I have endometriosis. I was on visanne for about a year. It induces a temporary type of menopause. It was ok, for menopause lol. It's a newer drug therapy. Also endometrial ablation may be an option for you. I know people who have had success with that. I've also tried depo provera but my body really did not like it one bit. It worked for my mom though. My sister had a hysterectomy.

Ghlsd, I was leary of starting plaquenil as well but now after a few months in I can really see how it helps. It is a DMARD which means it slows disease activity or modifies it. With connective tissue diseases it is important to keep progression under control. Plaquenil does this without the nasty side effects that other drugs such as prednisone can have. It's gentler. It's most certainly a good start. Also if it helps you it will give your rheumy an indication that they are on the right track.

All the best to you both and gentle hugs :)

Joie
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/11/2014 3:57 PM (GMT -6)   
I have no issues from plaquenil.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1037
   Posted 6/14/2014 4:14 AM (GMT -6)   
I too have UCTD. I also have ulcerative colitis so many of your symptoms are familiar to me. I am 31. I have been dx around a year. I am happy to chat anytime. My email is in my profile
30 female. Sherrie, 2007 UC, 5/13 UCTD, 10/13 Fibro, Hypothyroidism, Intercostal Neuralgia, Dysautonomia, Meralgia Paresthetica, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, and Anemia.
Plaquenil, Lialda, Canasa, digestive ad lactose, Wellbutrin, Cymbalta, Lyrica, Midodrine, VSL 3DS, Rainbow light, Vit D, Humira 12/12

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 6/14/2014 10:51 PM (GMT -6)   
I have been taking Plaquenil for 5 years for UCTD. It has helped quite a lot. So much so that I've tried to stop it a couple times, feeling like maybe I could do without it. But that hasn't worked. Within 1-2 mos. the troubles start piling up and I have to get back on. I have no side effects from it and I'm so grateful it works as well as it does. In addition, since wheat/gluten intolerance was mentioned, I was dx'd with Celiac disease 4 years ago, and getting completely away from gluten also brought about some additonal relief in many areas. It did not happen quickly, as it is a process to truly eliminate it. But I would suggest pursuing that possibility as it's effects can produce so many symptoms - and some that are not obvious or GI associated. Good luck!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/15/2014 1:11 AM (GMT -6)   
Remember get tested for gluten issues. Our bodies need the fiber that is in gluten unless we are sensitive.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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