Undifferentiated Connective Tissue Disease

I have this! Diagnosed about 2 years ago after another 2 years of visits to rheumatologist, head of the Lupus program at our local Ivy League university medical school.
It started with cutaneous Lupus which remitted with hydroxychloroquine, still taking it. Recently dosage was increased and that helped a lot.
Not fond of that, but it worked for me.
Nobody I know ever heard of it and they seem to think I made it up! Now I don't speak of it, just live my life grateful to be relatively symptom-free.
My best wishes to you! I hope you have a great rheumatologist whom you trust. That's key!

Hello @cherylmcg, Welcome to Connect. I see that you have already connected with @yellowdoggirl who has shared some tips that helped her. Here is some more information you might find helpful in learning about the conditions:

-- Undifferentiated connective tissue disease: https://rarediseases.info.nih.gov/diseases/12342/undifferentiated-connective-tissue-disease
-- What is CMT?: https://www.cmtausa.org/understanding-cmt/what-is-cmt/

Have you seen a rheumatologist or made any lifestyle changes to try and help?

@johnbishop , thank you for the NIH link. That's full of good information!

Thank you Yellow Dog Girl!! It’s nice to know someone else has this and that increasing the dose helped you. I am working with a highly regarded rheumatologist. The hydroychlorquin dose was suppose to be 400 but I started with 200 because I had developed a rash after taking 88 of thyroid medicine but was ok on 44. Anyway after 2 months and no rash or improvement I increased the dose to 400 and will try this for 3 months. What dose worked for you? FYI-the doctor said 300 is the correct dose for my weight/height.

Good morning @cherylmcg You sound so positive even though you’ve got this long list of other diseases. I’m very glad glad you’ve met @yellowdoggirl. She can probably be very helpful to you. . I wanted to ask though with the other diseases that you have like Charcot Marie tooth and hypothyroidism are they managed pretty well or does everything get in the way of everything else? I’m really glad that you don’t have much pain!
You are going to increase your hydrochloriquine today—will you let the group know how you do?

Hi @cherylmcg,I started on200 mg hydroxychloroquine.A few months ago (I think!) my rheumatologist and his Fellow are increased it to 400 which I have been taking. Starting it helped, increasing it helped, but about 300 is the dose for my weight, 341 is the toxic level according to my opthalmologist who checked my eyes yesterday.
She found no problem, but said I should be on 300
I am very careful about my eyes so I contacted the rheumatologist, asking if I could go to 300. I will be cutting 200 mg tablets in half to make the 300.
He said it takes 2-4 weeks after a dose change to know what the effect is it so I will wait and see.
I can go back up if needed.
My blood work was way better on the higher dose.
(I have a few things,too- pernicious anemia and celiac disease hypoactive thyroid, IBS, and an as-yet undiagnosed thing, maybe dysautonomia. I mostly know how to manage them now so I try to ignore them.)

Hi Becky. Thank you for your positive reply! Although my CMT symptoms have been there mildly my whole life, when a friend said you walk funny in my 60’s, I went to Stanford and had the nerve conduction test which confirmed CMT 2 in 2014. There is nothing they can do as it just gets progressively worse. I found braces made by CMT’er in Canada that helps me walk. I found a toe support fit my hammertoe. I’ve stopped dancing and hiking. I bike 3 days a week 60-75 miles and do weight lifting. My insomnia is managed by limiting coffee, activity in the evening, quiet/dark room, hot bath and eating carbs before bed. I struggle currently with fatigue/mood coping skills. I walk slowly which has reduced my falls. I take care lifting but find I’m breaking kitchen dishes more frequently. I will keep everyone updated about the hydroxychloraquine. My swollen salivary gland became very enlarged last August after bicycling in a dusty road along a marsh. I applied hot compresses 20 minutes each day morning and again at night and consumed 10-12 8 oz glasses of water for 6 months, massaged the area and sucked on lemons and it has gone down but it’s still there. Then I was referred to a rheumatologist and started the hydroxychoriquin. My hypothyroidism blood work is normal on 44 mg of medicine starts with l. My WBC counts are low….

@cherylmcg , I just read about all the things you are doing to keep going and the great work you did getting diagnosed and I am really impressed by how successful you are! I wish you the best of continued success? You have earned it!

I was diagnosed with UTCD eight years ago, but I'm not sure that is my problem. My rheumatologist said it is mild but my symptoms don’t seem so. I think my diagnosis was based on a positive ANA (1:320 then 1:160) and knee pain. I also had a positive ISCA igg (90.4) and Iga (67.6) test on an IBD panel but a colonoscopy and endoscopy ruled out anything. I'm 42 years old and my symptoms don't seem to have improved or worsened. 

One of the main issue I seem to have is weakness in my ankles, feet, and calves. No one seems to know what to think of it.  I've been checked by a neurologist (head MRI, nerve conduction), endocrinologist, vascular doctor, gastroenterologist, and physical medicine and rehabilitation doctor, and others, but nothing really has been found. Lyme was ruled out too. 

Other symptoms I have are knee pain, fatigue, pressure in my head and face, depression and anxiety, pressure in my pelvic area sometimes, and vibration, tingling or pins and needle type sensations sometimes. 
I take plaquenil and an antidepressant. At other times I've tried prednisone, methotrexate, sulfasalazine, Lyrica, gabapentin, and others.  Nothing has seemed to make much of a difference.  
Just wondering if anyone had heard of anything similar?

Thanks,
Chris

Welcome, Chris. You'll notice that I moved your post to this existing discussion of the same name:
- Undifferentiated Connective Tissue Disease: https://connect.mayoclinic.org/discussion/uctd/

I did this so you can read previous posts and connect easily with members like @yellowdoggirl @cherylmcg @jenko108 @oldkarl @basslakebabe19 and many others.

You might also be interested in these related discussions:
- Undifferentiated Connective Tissue Disease turning into Lupus? by @pattym https://connect.mayoclinic.org/discussion/undifferentiated-connective-tissue-disease-turning-into-lupus/
- UCTD, low MCV, low MCH and low neutrophils by @aayre https://connect.mayoclinic.org/discussion/uctd-low-mcv-low-mch-and-low-neutrophils/
- Recently diagnosed with autoimmune disease - looking for support by @mils, https://connect.mayoclinic.org/discussion/recently-diagnosed-maybe-need-support/

It sounds like you are questioning your diagnosis of UCTD, and are puzzled by the persistent symptoms that neither get better nor worsen. A common theme among members with UCTD is that many of them have other autoimmune conditions along with UCTD. Might that be your situation too? Do you have other autoimmune conditions?