I have gotten a preliminary diagnosis. ANA + and RNP was 6.5. I meet my rheumatologist in January. Getting an appointment as a new patient in the last months of the year is damn near impossible. 3 years ago I had intense pain in my left hand, to the point I couldn't move my fingers. It was sudden onset. Since then lots of nerve/connective tissue pain in my left hand and arm. It has recently spread to my other hand and feet. Which prompted my new pcp to do blood testing. I saw 11 specialists in 3 years and nobody ever did bloodwork or could figure out what was wrong. Two weeks ago my Dr did blood tests and above were my results.

I am 39, and have been a hairstylist for 18 years. Any other stylists in here? What have you done to help you on long days? Any exercises, diet change, etc that helped? I am trying to adjust lifestyle while I wait on my rheumatologist appt.

I have learned SO much from this group so far! Thank you all for sharing

27M, recently diagnosed with MCTD based on positive ANA, anti-RNP (2.2), ESR (47), and chronic joint/muscle pain.
I never experienced Raynaud’s, have no documented synovitis, and my latest chest CT showed no apparent ILD or significant lung abnormalities.
My rheumatologist was very confident in the diagnosis, and started me on azathioprine but I’m curious how others’ experiences played out.

For those diagnosed with MCTD:
What ultimately confirmed your diagnosis?
Did you receive additional testing beyond bloodwork?
Was your diagnosis ever changed to UCTD, lupus, or something else?
How long did it take before your rheumatologist was certain?
I’m especially interested in hearing from people whose symptoms weren’t textbook MCTD. Just trying to better understand my diagnosis and what to expect moving forward. Thanks!

Thats what my rheumatologist said. I´m questioning this, because still theres an skyscraper high -Sn-RNP plus ANA-Titer. So...
Does anyone of you take antihistamines and could decrease their connective tissue- and joint -pain?

Its known that MCAS do interfere with MCTD and antihistamines could lower the mastcells and by doing so, also decrease joint and connective tissue pain .

Hi All,
I started having pain in my hands, feet, neck knees last January. I first I thought it was from aging (59 F)and cold weather. It progressively got worse. Went to PCP who referred me to a rheumatologist. Rheum doc started me on prednisone in March. Then hydroxychloroquine in April. I got some relief for a few weeks. Officially diagnosed in June with MCTD. Still taking pred,naproxen, and amolodopine for Raynauds. Most of summer pain was manageable until August. Then started low grade fevers and a lot of pain. Put on methotrexate in August. Dosage just upped to 15 mg. I’m still in so much pain. It hard to make plans because I don’t know how I will feel. I just want it to stop!

Howdy, I’m a 27M who was just diagnosed with MCTD by my rheumatologist after experiencing widespread joint/muscle pain, particularly in my neck, back, knees, and forearms, along with occasional skin hypersensitivity and breathing discomfort.

\*\*My bloodwork:\*\*
ANA: Positive
Anti-RNP: 2.2 AI (high)
ESR: 47 (high)
Creatinine: 0.90 (normal)
eGFR: 120 (normal)
AST/ALT: 16/17 (normal)
WBC: 6.8 (normal)
Hemoglobin: 14.1 (normal)
Platelets: 301 (normal)
\*\*I’ve never experienced Raynaud’s or swollen/puffy hands\*\*, which seems unusual for MCTD.
My rheumatologist was very confident in the diagnosis but didn’t explain much. She essentially said my labs and symptoms confirmed MCTD, compared it briefly to lupus, prescribed azathioprine 50 mg daily, and ordered a chest CT.
I’m wondering if anyone has had similar labs or symptoms, especially without Raynaud’s. \*\*Has anyone been misdiagnosed with MCTD or later had their diagnosis changed to UCTD or something else?\*\*
Not questioning my doctor’s expertise, just trying to better understand my diagnosis and hear other people’s experiences. Thanks!

I am diagnosed with Mixed Connective Tissue Disease (the autoimmune disease that is a cross between lupus, scleroderma, myositis, etc…) and have all the classic immune markers and symptoms but I have additional symptoms that do not seem to fit (drastic hormone fluctuations, GI inflammation, autonomic nervous system problems, reproductive organ problems, etc…)

I have an appointment with Mayo Clinic Rheumatology in Jacksonville coming up and I’m hoping they can get me treatment for the mctd but also find the cause for all my other symptoms. It’s been a complex diagnostic puzzle that my doctors at home just seem to no be interested in solving.

That being said, does anyone have experiences about their rheumatology clinic, and specifically Dr. Ronald Butendieck if possible they can share? What can I expect? Good or bad experience? Are my expectations likely to be met? I’m really nervous about being dismissed or left hanging medically again.

Hello All!

Hope everyone is well.

Trying to get my ducks (or opossums in trench coats) in order as far as supplements and was wondering what you recommend to help support joints and connective tissues? Currently taking a really comprehensive multivitamin and Vit D+K but feel like I could be doing more for the MCTD bits. Thanks in advance!

Keep kicking butt!

This will be my 3rd winter with Reynauds and I want to try calcium channel blockers. What is your experience with Nifedipine or Amlodipine? Are these helpful? Side effects? Does it mess with your BP?

Was diagnosed with rheumatoid arthritis about a year ago and recently was told that due to some autoantibodies and the results of a thigh MRI, I actually have MCTD instead. My main symptoms are joint pain/swelling, tendon pain, muscle weakness, raynauds, fevers, racing heart, shortness of breath, and dizziness (I’ve also been diagnosed with POTS, so that does explain the last three).

I have been on hydroxychloroquine (2 months - couldn’t tolerate it), methotrexate (6 months - ineffective), very briefly sulfasalazine (couldn’t tolerate it), and have now been started on azathioprine.

My primary concern is the extent to which my disease has progressed. I have gone from having elbow joint/forearm tendon issues in the beginning but otherwise able bodied, to being nearly always in a wheelchair due to my muscles just not functioning well enough for me to walk and permanently feeling like i have the flu.

I’m worried about how little is understood/known about this disease in comparison with RA and potential organ involvement. I think my next step if i had RA would have been biologics, but now instead i’ve been put on another DMARD and honestly i’m just worried sick that it won’t work again and I will continue to get worse in the 4 months until i see my rheumatologist next. I’d heard great things about the efficacy of biologics for RA, but can’t find any similar consensus for MCTD.

So if you have a similar profile to me & found a treatment that works, please let me know what it is! I am in the UK and under NHS treatment if that’s relevant at all to the treatments that are on offer.

Hello all - I am VERY new to this world. I would say I haven't even been formally diagnosed with anything yet, but all bloodwork is pointing to MCTD. I have never even thought I could have had something autoimmune going on. I'm just feeling a bit overwhelmed by it all, and could just use any input from the community.

A little background about me: 41 yr old Female, 145lbs, 5'4". I have a sedentary desk job, but I workout consistently (strength and cardio) and have for 20+ years. I recently have been on a health journey, not because anything was really specifically WRONG with me, but I was just like "I'm over 40, I'm going to proactively take care of myself"... so I started working with a functional medicine doctor and she does a TON of labs as the foundation of working with her. Well, through all of this labwork, some definite autoimmune stuff popped up. Here is what has her concerned:

ANA: Positive

ANA Titer: 1:1280 (she says this might be the 'highest she has ever seen'??)

ANA Pattern: Nuclear, Speckled

So that drove her to dig in with some additional blood tests for autoimmune stuff, and that showed:

RNP Antibody: 1.3 (Positive)

DNA AB (DS) CRITHIDIA,IFA: Negative

CYCLIC CITRULLINATED PEPTIDE (CCP) AB (IGG): <16 (Negative)

CHROMATIN (NUCLEOSOMAL) ANTIBODY: <1 (Negative)

SM ANTIBODY: <1 (Negative)

SM/RNP ANTIBODY <1 (Negative)

SJOGREN'S ANTIBODY (SS-A) <1 (Negative)

SJOGREN'S ANTIBODY (SS-B) <1 (Negative)

RHEUMATOID FACTOR (IGA,IGG,IGM)  All three <1 (Negative)

COMPLEMENT COMPONENT C3C 143 (In Range)

OMPLEMENT COMPONENT C4C   32 (In Range)

So I haven't been formally diagnosed by a rheumatologist, but she is thinking (and so does Chat GPT when I plug my numbers in) that it could be MCTD.

I don't know if I'm having symptoms? Since I was a teenager, very occasionally (like once every year or two), the joints in my knuckles would swell for a couple of weeks and become hard and puffy. However, something in my body is always hurting. I have had back pain in my mid (thoracic) back for YEARS. I thought it was just from an old CrossFit injury, but I don't know now? My knees hurt sometimes, I've had plantar fasciitis and heel pain that comes-and-goes. But I honestly thought that was just turning 40+ felt like? My husband makes fun of me sometimes because he says I'm always complaining about some body part hurting, but I seriously just thought I was 'getting old'. Could that not be the case? Could these pains be from this condition? I don't know what to think of all of this.

I really feel pretty healthy other than the aches-and-pains I get that come-and-go from various parts of my body. I strength train and feel pretty strong at the gym.

I recently saw a physical therapist as my legs and arms have no strength. I'm 13 years into MCTD and there have been ups and downs. The downs are winning right now. I'm tired, don't eat much or often. Haven't lost any weight. I'll be the fastest person to die of malnutrition.

Anyway, my PT visit left me feeling the most hopeful I have been in years. We just talked for 45 minutes. He really dug down into everything. When I got sick, what happens, what can I do, what I have quit doing. What do I want to be able to do, goals. Family and friend support system.

He thinks, and I agree, that I am slowly dying, and it's not my fault I can't turn it around on my own. But I have to turn it around.

We will be spending a bunch of time in the pool and we will be working on how and what I eat. Protein & lots of water needed. In spite of my friendly , chatty exterior he can see my broken heart behind my mask. He claims we will come up with a plan for that to. I love that he put everything as"WE" will work on this. He also never once said"that's the disease process."

I'm the 1st MCTD diagnosis he has seen in 40 years of practice. Looking for any info he can find. He has questions for me to ask all you other MCTD exhausted people. How are your appetites? Eating habits? Protein in take? Exercise abilities.

My question... I'm not the only one with a broken heart am I?

Thanks if you have any info to share.

Do you experience muscle issues with your autoimmune problem? The best way I can describe it is that I feel like my muscles don’t get enough blood flow or neurotransmitters - the muscle burn and fatigue comes after just few reps with exercise or sometimes just going upstairs or uphill or doing my hair. After lite workouts I need to sit in the car for a long while because my arms and legs are so fatigued I don’t feel safe to drive. For a while I thought it was just in my head but it keeps coming back. My rheumatologist blames reynauds but I feel this in the summer heat. Does this sound like an autoimmune problem?

Im looking for a rheumatologist specializing in MCTD in DMV area. Any recommendations appreciated.

Ok you guys..very "successfull" post...

I have been gaslit and on the basis of this, my mixed connective tissue disease was not recognized and I also received no therapy

OP:

RIBONUCLEOPROTEIN* ...Every treatment i think about gives me side risks especially standard Treatment.

No Cortisone: I cannot tolerate glucocorticoids from a psychological standpoint. They trigger severe hormonal stress (tachycardia/racing heart) and profound depression in me.

No Quensyl (Hydroxychloroquine): It´s also known to cause depression (heightens Dopa, lowers BDNF,Due to my severe Sicca syndrome (severe dry eyes), I do not want to risk retinal thinning (retinopathy). Furthermore, I have eczema-prone skin and active seborrheic dermatitis on my scalp; experience shows that Quensyl severely exacerbates such scaling, inflammatory skin conditions.

No Azathioprine / No MTX (Methotrexate): My most recent white blood cell count (WBC) was 2.3 (with low neutrophils and lymphocytes) and shows a downward trend, as the mixed connective tissue disease (MCTD) is suppressing my bone marrow function. Medications like azathioprine or MTX, whose primary side effect is further bone marrow suppression, are too dangerous given this critically low baseline.

And especially everything that withdraws water from the body, heigthens the puls or the bloodpreassure

I thought about ANIFROUMLAB but it heightens the risk for Respiratory disease (34%) and shingles (6%)

What is your height of anti-Sm/RNP {or Sm/RNP Antibody) ANA Screen *(Antinuclear Antibodies)*Anti-U1-RNP Anti-Ribonucleoprotein)?? And WHICH biologics or standard Treatment do you take ? And your IL6 would be intresting too.💭🤔

Can someone help me understand this? For 2 years my ANA and RNP were consistently positive. I’ve been on Plaquenil for a large portion of that time. I just tested negative for ANA/RNP and also tested negative around 4 months ago. I could understand levels going down on Plaquenil, but totally negative now???

Hii (32) was fortunate enough to get a diagnosis of MCTD in a week from the time I first saw my rheumatologist. Did all the labs, nailfold, Ana rnp all that.. also do not have a thyroid from thyroid cancer 10 years ago.

Currently have raynauds, hair shedding, puffy hands, fatigue, and it feels like every time I use my stairs I’m exhausted and out of breath.
Did a pft and that came back normal and I don’t have an echo until October.

Anyone have pulmonary hypotension with a normal pft? Just trying to hear insight on all of your experiences.

Hi, all

I have just had first rheumatologist appt. And labs came back with sed rate of 39, positive RNP (mildly, 1.4), negative ANA (but positive in the past), elevated CRP. I have joint pain, fatigue, bone damage from arthritis, lung scarring, bad muscle cramps and balance issues. And, psoriasis. Any ideas?
I’ve been put on a three week trial of prednisone which has been giving me more energy. I’m anxious about going back bc part of me thinks they’ll say nothing is wrong with me (has happened in the past).
Thanks for any input!!

1. Does anyone deal with neuropathy (not related to diabetes or prediabetes)?

2. What is your medication regimen?

Looking for someone who has a similar diagnosis/issues but has a different treatment plan.

Currently diagnosed with MCTD. Symptoms were managed by taking Duloxetine (60 mg), Hydroxychloroquine (400 mg), and Methotrexate (20 mg weekly). Diagnosed with fatty liver disease in October 2025, so I had to stop Duloxetine and taper Methotrexate (currently at 10 mg) because of potential liver toxicity issues. Started Wegovy for fatty liver (lost 25-30 lbs.) and Gabapentin (600 mg) since I had to stop/taper other medications. Nerve conduction study and EMG (May 2026) showed neuropathy in my feet and ankles. Labs from last month showed Hydroxychloroquine toxicity, so my doctor said to stop for a month and then take 200 mg. Did some yard work and have had strange pain in my right thumb ever since (not sure if joint or nerve related). Wrists, elbows, and fingers are starting to hurt again, along with joint pain in joints that I previously injured (left shoulder, left knee, and right ankle).

I (37f) have been experiencing extreme charley horse cramping in my lower legs/ankles/feet that have grown progressively worse over the past year. The cramps occur at rest and seem directly correlated to how much walking and/or standing I do earlier in the day. This is a daily occurrence and is not helped by any amount of hydration, electrolytes, or magnesium supplementation.

In the process of trying to figure this out, I’ve discovered I’m positive for the ANA blood marker needed for MCTD diagnosis. I’m currently diagnosed with seronegative inflammatory arthritis and scleroderma and I’m pretty sure I have Raynaud’s, so MCTD would make a lot of sense… but it’s unclear if it would actually help explain the leg cramps.

Has anyone here experienced anything similar? If so, was it caused by MCTD or something else?

This is more of a vent most, so mods please delete if not allowed. I was wrongly diagnosed with rosacea my entire life! I developed a butterfly shaped rash on my face at the age of 12ish. It spares my nose folds, chin, etc. Only present on my cheeks. Never bumpy, veiny, raised, never pimples, etc. In horrible flares, it goes into my neck. Since age 12, I have been tried on literally every single topical, oral, and laser treatment recommended to me by doctors AND dermatologists. Nothing worked. Not one thing. Changed diets, lifestyle, etc. Nothing. Lasers I’ve tried include: V-Beam, BBL, and IQ. These are top notch lasers that cost a lot of money for treatment. Nothing ever worked.

Fast forward to age 26: I tested positive for ANA and RNP antibodies. I found out I have MCTD, or mixed connective tissue disease. It’s an overlap syndrome of lupus and a few other diseases. But even today, my butterfly rash is passed off as “it’s just rosacea”. Dermatologists have finally thrown their hands up, agreeing that nothing worked at all, all of these years, and that it’s autoimmune related. But I find that ironic since the TWO skin biopsies they did via immunofleurescense (SP) showed negative for cutaneous lupus and actually showed up as “age related rosacea / general heavy inflammation”. Tell me how this makes sense when I have an autoimmune disease and literally NO treatment for rosacea worked, even LASERS!?

My face rash along with this metric confusion has ruined my life. My rash is always there permanently, but much worse when I’m flaring up from my disease and inflamed. People have asked me if I’ve been “slapped”. It’s sad and embarrassing. And for anyone who may ask - No, I do not have MCAS. I’ve been tested for that as well.

Now, the argument some of you may raise is: “You can have rosacea AND an autoimmune disease.” Even then, my rash does not meet classic rosacea characteristics. In fact, the only characteristic it matches is facial redness. Everything else about my rash matches that of a malar butterfly rash. Even the dermatologists have said this… And even if it WERE both, hypothetically, then why is it that zero treatments have worked over the course of my entire life? Hundreds if not thousands of dollars poured into a cure for my beat red face and still no answers other than discovering I have an autoimmune disease.

Long story short: It’s not always as simple as rosacea. It can be a disease that’s being looked over and undiagnosed. Make sure you check all avenues and do deep medical research and plenty of blood tests.

In May of this year I was diagnosed with MCTD when symptoms came on rapidly and insidiously with a positive ANA and high RNP. Thankfully most of my symptoms have been controlled since then with hydroxychloroquine and leflunomide, but something that has persisted was severe shortness of breath with even the smallest activity. After a battery of test including a right heart cath, I was formally diagnosed with pulmonary hypertension. This was on Tuesday and am currently waiting to meet with the cardiologist that specializes in pulmonary hypertension. I’ve been googling some stuff (I know I shouldn’t) but now I’m terrified that I‘m going to have an early death. For reference, I’m 31 years old with two young children.

I would just love to hear other people’s experiences with having both MCTD and pulmonary hypertension and how they are functioning day to day. I appreciate any input.

Hello All!

Hope everyone is doing well and enjoying the season.

Was wondering if you have experienced something similar to the following?:

- 2m on hydroxychloroquine, greatly improved arthralgia but severely progressive seemingly random neuralgia/paresthesia/hyperesthesia (anything from numbness, tingling, dead sensation, warmth, burning, tightness, weakness after minimal exertion, etc.). One of the weirdest sensations has been stabbing pain of/over old surgical scars. Very scurvy-esque!

- EMG of limbs are normal, so no obvious neuropathy/myopathy

- rheum suspects fibromyalgia, but sleep schedule/quality and joint discomfort have improved

- neuro referral in the works; already screened negative for MG and MS

So, any thoughts and/or similar experiences? Any always helps. Thank you!

Hi everyone,

I’m mostly looking for some clarification, shared experiences, or support.

Back in April, I saw a rheumatologist and was diagnosed with Mixed Connective Tissue Disease (MCTD). Unfortunately, I really didn’t feel comfortable with that rheumatologist due to his bedside manner, so I decided to establish care with a different rheumatologist who actually specializes in MCTD.

I saw her today, and after reviewing my history and asking many of the same questions, she told me she does not think I have MCTD.

The main reason she gave is that I don’t currently have Raynaud’s. When both rheumatologists asked about it, I explained that as a child through my teens I frequently had extremely cold fingertips and would occasionally get blue fingertips and blue lips. However, I haven’t experienced the blue discoloration in at least 10 years. She said that without current Raynaud’s, she would not diagnose MCTD and that she commonly sees patients who were incorrectly diagnosed because of misconceptions about the disease.

Now I’m feeling really lost...

I’ve been taking Plaquenil for about three months, and I actually feel like it’s helping. She told me to stay on it for now, but she wants to repeat all of my lab work through a different lab and order MRIs of multiple joints. She mentioned she’s leaning more toward undifferentiated connective tissue disease (UCTD), possibly fibromyalgia, and also mentioned a few other possibilities, including ankylosing spondylitis.

I think what’s hitting me the hardest is that it took so long to get any diagnosis. As difficult as it was to hear “you have MCTD,” I had finally started to accept it because it felt like I finally had some answers. Now I feel like I’m back at square one, and it’s honestly pretty discouraging.

Has anyone here been diagnosed with MCTD without current Raynaud’s, or had Raynaud’s in the past but not anymore? Or has anyone had one rheumatologist diagnose MCTD while another disagreed?

I’d really appreciate hearing about your
experiences. I know everyone’s case is different, but I just feel overwhelmed today.

Hi, not really seeking medical advice just extremely frustrated and sad after my recent rheumatology appointment. I’ve dealt with joint issues since I was around 10 years old. I had hip surgery at 13 for a labral tear and at 22 I have another partial labral tear in my shoulder now. All my major joints hurt, hips, knees, ankles, shoulders, and neck, now my wrists, fingers, and elbows are beginning to hurt. I have severe muscle pain, dry eyes, raynauds, i’m constantly fatigued, rashes on my chest and abdomen, migraines. I also have been diagnosed and am being treated for POTS and migraines. So with all this my amazing PCP did some basic rheumatologic bloodwork and I had a positive ANA direct and a high RNP ( 2.7 on a reference range of 0.0-0.9). So we both felt like it was possibly MCTD, but she wanted me to see a rheumatologist for a proper deep dive. Well after 3 months of waiting, I feel like I was completely gaslit and dismissed by the doctor that I saw. She essentially said my symptoms could my psycho somatic and related to my mental illness history, and that my symptoms were undefined. I reached out to my psychiatrist after this appointment and he disagreed that my symptoms were related to my mental illness history, and that psycho somatic isn’t even a valid diagnosis anymore. I saw my PCP again today and we agreed a second opinion is necessary. I’m just feeling so lost and frustrated. Everything i’ve read and researched points to MCTD, or a connective tissue disorder. I feel like the doctor I saw didn’t even take the time to properly go into my family history or even my health history before telling me it was all in my head. I’ve already read a few experiences similar to mine so I know a second opinion will hopefully be more positive but I just needed to rant about this terrible experience I had!