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Posted By : beaubail - 5/8/2017 2:33 PM
Hi,
I guess I'm just looking for some suggestions or what others have done.
I'm 28 and I'm pretty much new to this autoimmune thing. In September I started seeing a new primary who collected a bunch of blood because mouth ulcers, joint pain and skin rashes. My labs came back + ANA and high tighter SLE. I've seen several different rhuematologist's already because my primary didn't like the outcomes. I had a biopsy taken from my left arm from a "rash" and it came back possible connective tissue disease and a few other things. I like the new rhuematologist. He says nothing is definitive, but it's possible that I have Lupus. Enter his NP. She says I do not have Lupus were just going to diagnose you with Mixed Connective Tissue Disease for now, take Plaquenil 400mg daily come back in 3 months. That's all! I've lost 15 pounds in a month my hair keeps falling out,my body hurts like hell, my skin is a little better( granted I use a steroid cream from the derm.) I have three new ulcers on my tongue and I've have insane bloody nose's to the point where it makes me sick. I just don't know what to do. This is all way too much for me. I have nobody but my primary on my side who just wants to keep doing biopsy after biopsy on me.

Help?!

Posted By : bamablondie - 5/8/2017 2:59 PM
Hi! I'm new here...

But same here. Been seeing a primary doctor for 7 years complaining of joint pain, migraines, rash, hair loss, etc... she keeps giving me all kids of run around. FINALLY I schedule my own appointment with Rheumy last month and he says that because I do not have protein in my urine and that none of my organs are being damaged it looks like its undifferentiated connective tissue disease at this time. BUT that it could turn into lupus later - that my body just hasn't decided to go "full blown" yet... Right now I'm on Plaquenil 400mg a day and aleve every morning. Along with magnesium and amitriptyline. I go back in two months...


By the way, I've read that mouth sores aren't supposed to hurt. But mine hurt like hell! Anyone else experience pain with their mouth sores?

Posted By : Lynnwood - 5/8/2017 3:57 PM
Don't worry - UCTD is not a "lesser than" diagnosis - you will get EXACTLY the same treatment as though they've written Lupus on your chart!

The most common initial course of treatment is Plaquenil 400 mg daily and a recheck on 2-3 months.

You might consider going back in one month and asking if there are more symptom-specific treatments while you are waiting for Plaquenil to kick in. (It takes 2-3 months to build to a therapeutic dose.)

Meanwhile, use saline wash for your nose ulcers, you can also coat them with a thin layer of petroleum jelly to keep them from drying, cracking, and bleeding. Try Biotene products for mouth issues - they have a line of mouthwash, toothpaste, etc.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Tinkerbee - 5/8/2017 4:01 PM
Regardless of what name you put on it, lupus, MCTD, UCTD etc, you have been put on Plaquenil and rightly so. It is the first line of defense for AI issues. Keep in mind that Plaquenil takes 4-6 months to build in the system brfore you will see any improvement. Sounds like your docs are taking the correct approach.

Posted By : Bsime - 5/8/2017 9:49 PM
UCtD is the diagnose for overlap disease when it is not clear exactly what the overlap is. It is the "I don't know exactly what my patient has diagnosis" but as other have already said docs will treat as though it is lupus.

MCTD is a more certain diagnosis when the anti rnp antibody shows up. It does include symptoms of sle lupus, polymyositis, and scleroderma but each case is different. You will have lupus with that diagnosis and be treated as such. It presents a more complicated diagnosis and set of symptoms and often can include other overlap disease like RA or other AI diseases. Autoimmune diseases are different from others and it takes a while to understand them let alone what a more complicated version, an overlap like mctd, is. Once the immune system is misdirected it can produce other AI diseases depending on what trigger (you will never know what they are) you are exposed to. The good news is that most cases are treatable.

Sounds like your docs are treating you properly. Now it is just a case of seeing if plagquine will work for you but there are many other treatment options to try.

By the way, labs usually but not always confirm lupus. They are often lagging indicators to use an economic term. How you feel is more important than confirming labs.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Posted By : Loz870 - 5/21/2017 4:51 PM
Hey guys, I've been diagnosed with MCTD too, I just turned 30 and in Feb I was stumbling around like an 80 yr old with extreme joint pain in my hands and feet, tightness in my chest, rash across my cheeks and complete muscle loss, my GP diagnosed it after extensive blood tests and sent me to a rhumey, that was however a 2 month wait so in the meantime I saw a naturopath that put me on a vegan diet.
I did a lot of research and found that autoimmune diseases have a lot to do with your gut health and most patients will have a form of leaky gut syndrome.
So the vegan diet drastically reduced the inflammation I had in my joints, and I started taking turmeric and curcuma tablets which also reduced the inflammation. I have slowly started to introduce meat to my diet, but no red meat as it is too acidic. I don't have any grains, sugar, dairy or anything containing yeast or gluten which are big culprits with leaky gut.
I had a piece of toast with vegemite (high in yeast) and was absolutely crippled by the afternoon and realized how the diet really effects inflammation in your body.
I do still get very soar from over use of particular body parts like if I walk to much my feet get inflamed but nothing compared to before I started on the diet plan. I just started plaquinel from my rhumey though and will not take any steroids for pain. It's going to be a long three months waiting for it to build up but I feel like my body is better for it.
I've lost 28kgs since being diagnosed due to lack of appetite and a numbness in my mouth initially, but due to the diet I have reduced rhynolds(however you spell it lol) and my appetite is slowly returning. The rash is also completely gone from my face and my skin has never been clearer.
Never underestimate the healing power of food, there are so many chemicals in everything we eat, try and stick to as much fresh produce as possible. t
Try some natural alternatives because I know at 30 the idea of being on medication for the rest of my life is not a great prospect.

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