MCTD (Mixed Connective Tissue Disease)

Posted by EllashaB @ellashab, Oct 3, 2011

Ok, here goes my story....4 Weeks ago I was diagnosed with Mixed Connective Tissue disease...I am normally a busy busy person, I work full time as a police officer, volunteer at my church, work a lot of off duty, and I have Three Boxer Dogs that I show, and I'm married...so I have a lot going on and this has pretty much put a stop on everything...I'm on 30mg of Prednisone, Plaquenil, Imuran, and Amitriptiline (for depression, anxiety), and Nexium twice a day...Some days I'm fine and other days I can't get out of bed either because I'm so tired or I'm having a flare. I would just like to talk to other people who have this disease and who can relate to me. I feel like I'm losing my mind and body for that matter.....Is it always going to be like this? How do I slow myself down? The concept just seems so alien to me....HELP

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

anniemani | @anniemani | Nov 5, 2023

In reply to @mctd1972 "Hey, folks, great to get to know everyone, I read just about every post here. Anyone..." + (show)

@mctd1972

Hey, folks, great to get to know everyone, I read just about every post here. Anyone have any intel on headache and MCTD? Mine is unilateral, involves left eye radiating to right ear, and is very odd in character-- an extremely unpleasant, abrasive sensation that's almost impossible to describe. The most recent change for me is really ghastly tinnitus-- two separate tones, one steady and high pitched, the other lower and oscillating. Etiology of headaches generally, and particularly w/ MCTD, seems insanely complicated... everything from thromboses and physical inflammatory pathologies that mere mortals might attempt to comprehend, but once we get into CGRP, cytokines, and neuron-glia crosstalk, well... let's just say, trying to make any sense out of that does not improve my headache! The neurologist they referred me to treats migraine as a standalone symptom, and diagnosed me with medication overuse headache, which seems totally depraved, given that I can have as many as two consecutive headache free days, I never get morning headaches when medication wears off... her attitude is that my migraine should just get better on its own as you get older, and the best thing to do is withdraw medication completely, which she wanted me to do on a taper with her. Then, they just try medications sort of randomly one by one-- uh, no thanks, yours truly has had some truly awful and bizarre reactions to medications that are really unpredictable. Instead, I did stop medication abruptly, had zero rebound headache for two days and zero withdrawal symptoms at any time, though headache crept back in on day three and is now brutal on day four (too much sun and exercise, probably.) Fortunately, I managed to get a referral to a much better neurologist for mid November, and I want to get a workup from audiology and opthalmology.

It's so crazy. Every time I have a few days without headache, I will gaslight myself: "Maybe you made it all up, maybe you just want opiates" but then it's like, I've gone 80 hours without them and I'm laughing and playing with my wife and dog, and have no craving for anything and anyone whose known me more than 15 minutes knows I'm not a dope fiend. My friends who are in recovery, and who WERE dope fiends, and my colleagues who work in recovery, all think I'm at nearly zero risk for addiction. Then I'll think, "Maybe the headaches are gone for good! Maybe it's finally over!" But it never seems to be. Thanks for your patience with the long rant.

Does any of this sound familiar? Anyone have symptoms like this, or any thoughts about pathogenesis or any non-narcotic, non serotininergic treatments that work? I've had a little luck with vitamin B2, but the benefits seem ephemeral-- works for a day or two when I first try it, often really well, but benefits then poop out. SSRIs and SNRIs are way too dangerous for me. Many thanks!

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Check out Occipital Neuralgia...... I get them every few years. It starts at the base of my skull and goes up the back of my head...sometimes up behind my eye. It also inflames the lymph nodes in the area and makes them hurt like little hot peas stuck under my skin.

In the past, I had trigger point injections into the muscle in my neck and it would stop the whole process within a day. I haven't had one in a decade, but it came back last week. With my MCTD diagnosis, my doctor put me on Advil 2x during the day and 300mg of Gabapentin at night for 10 days. I'm on day 6 and it's gone. But...yesterday at my follow-up the doc said he'd do the injection next time and hope for it to be gone in 24 hours by using a short and long-acting steroid with a local anes in the shot.
(I'm on plaquanil and bupropion)

anniemani | @anniemani | Nov 5, 2023

In reply to @mctd43years "I hope this helps. I am a 43 year survivor of MCTD so I have a..." + (show)

I appreciate your post!
I was just diagnosed correctly and started Plaquanil & Breztri 3 months ago. Wow! So many things have fallen into place...so many symptoms that were attributed to allergies and asthma have disappeared. We tracked my first symptom ( mouth lesions and butterfly face) to when I was 9 years old. I'm now 62.
I consider myself lucky to only have heart & lung issues that are responding to treatment. No kidney stuff. I've also had to learn to not let my medical issues ruin my life, and they haven't. I've had a very full active, athletic life.

Little did I know that a heart rate of 200 under exertion and skipping every third or fourth heartbeat was as dangerous as it was. It was "just how it goes and it's always been that way" My heart rate was never that bad at a doctor's visit because I was sitting down after waiting, and until I got a smartwatch, I always assumed I was counting wrong. Sometimes a nurse would ask if I was nervous being at the doctor's and wrote it off as white coat syndrome.

After a bout of "asthma" that didn't respond to albuterol or a nebulizer, I saw a pulmonologist. He held my wrist to check my heart rate and literally jumped out of the chair. I was at a cardiologist within 24 hours, got a full work-up, and was diagnosed with MCTD within 10 days. Neither of them could understand why I wasn't at least misdiagnosed with lupus with all the classic symptoms I've had. Water under the bridge.

So now I'm eating food without painful mouth & tongue lesions for the first time since I was 9 years old. I'm actually tasting food instead of trying to just get it into my gullet without it touching my mouth. I'm learning to not fear perfume, flower aromas and strong scents for fear of an asthma attack. It's a whole new world.

anniemani | @anniemani | Nov 5, 2023

In reply to @mctd1972 "Wow, an MCTD group! Long-term survivor here, 66 years old, diagnosed in 1972. Initial treatment was..." + (show)

@mctd1972

Wow, an MCTD group! Long-term survivor here, 66 years old, diagnosed in 1972. Initial treatment was 5-10 mg prednisone on alternate days, went into remission in my mid 20s-- supposedly-- but then severe headache began in my early 30s. Been through quite a bit-- accused of being a heroin addict as a teenager (I'd never touched the stuff), been turned away from the ER when I had pericarditis, almost thrown out of high school for 'malingering,' etc. First dx was lupus based on electromyogram though I was antibody negative, had pericarditis several times (decreasing severity with each attack) then mostly just headaches until my early 50s, then two massive DVTs several years apart, (that was when my anti-RNP was finally tested, strongly positive, well outside reference range) then in 2018 had diverticulitis, which is likely a complication-- I have dysphasia pretty bad sometimes, and it seems like peristalsis is impaired at both ends of my GI tract. Then a worse bout of diverticulitis in 2020 w/ small abcess, almost need surgery, but the antibiotics got it-- though the side effects took me back to the ER several times.

What has worked best for me, was low-dose alternate day prednisone initially, a very complex but pretty high-intensity exercise program, complete abstinence from alcohol and all recreational drugs, and very low doses of hydrocodone and benzos. (Not a popular treatment these days, and not an option when working, obviously.) I have a dim view of DMARDs and SSRIs, just my personal opinion. If I meet anyone who tells me, "Yeah, Plaquenil or Methotrexate with Cymbalta or Prozac or whatever have been great for me (for more than a year or two)" I am totally open to revising that opinion, I've just never met that MCTD patient. I really look forward to hearing what's worked for other people, and will always do my best to keep an open mind. I'm also on warfarin for blood clots, prefer that medication because it's more easily reversible, and I'm still doing a few sports.

I'm 65 and still work full-time... oh, well, almost full time, maybe 30 hours a week! I'm a psychotherapist, so I can spread out 15 client hours and 15 hours of admin and paperwork with plenty of rest breaks. Deep meditations every day, at least one 20 minutes, often two and often 30 minutes. I also play live rock shows a few times a year, small clubs and local festivals. Some shows are not so small, like 350 people. So that's the pattern: I can do everything anyone else can do, just not as frequently or for as long.

I am in moderate to severe pain every single day. Headaches are the worst-- I just can't stand 'em. The joint and muscle pain can also be severe, morning stiffness is at least 45 minutes. Started topical diclofenac for osteoarthritis.

I am down to body boarding 4 or 5 times a year, but I can still go out on small days. Went back to skiing this year, kind of crazy, mostly single black diamond and intermediate, but I will take easier double-blacks occasionally, even on later mountains. The key is lots of cross training and preparation, short sessions, and lots and lots of rest. What I avoid is long stretches of 85% exertion. What I seek is moderate periods of 60-70% exertion with only brief peaks of 85%. Body boarding is particularly tricky, because you can't just stop and walk away if you get tired-- and I've learned to stop LONG before I get tired.

Now the big question is: How much do I have to slow down to avoid worse osteoarthritis? I've got stage III in both hands, so there is structural damage, but no fractures-- and I don't want to get them. The OA is bilateral, which suggests MCTD, but worse on left hand, which suggests also overuse (guitar, and exactly the movement for fretting the strings.)

Should I really stop sports now to avoid having OA in my knees, back, hips, etc.? The OA, and more general musculoskeletal pain, is bad enough to wake me up several times on a bad day. OTOH, the exercise helps keep me sane, and helps-- a LOT-- with the brain fog. I rotate through exercises carefully, when I'm really feeling bad, I might do 10 minutes of lap swimming, 10 minutes of elliptical, 10 minutes charging up a steep hill with the dogs.

Thanks, and look forward to getting to know the other members of this forum.

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OMG, 1972........I have so many things in common with you except the music! I'm 62, new to this diagnosis, but with 50 years of symptoms gradually adding up to trouble. I'm also a psychotherapist working the same schedule!!! I do my 15 & 15 over 2.5 days and then am outdoors in very intense sports. Over the years it's been scuba diving, martial arts, and any motorsports I can get my hands into.
Plaquanil, bupropion and Breztri have eliminated almost all of my cardiac and pulmonary symptoms. I rotate exercise and physical work on my land, vehicles and home. I stay limber and social and count myself lucky to have already been living the lifestyle prescribed for good health for many years.
I'm also new to this forum and am glad to see it's active and positive.

mctd1972 | @mctd1972 | Nov 26, 2023

Hi, folks, just checking in between the holidays, hope everyone had a reasonably good one-- without too many, er, unrealistic expectations from friends, family, employers, pets, etc.!

Annie, great to hear your story, glad to hear from someone so active who is in their 60s! My last dives were in 2017, and involved... a lot of negotiations with primary care! First they said "No," I lobbied for a 60 foot dive limit, and I think we settled at 30 or 40 feet! But it was epic... I quite smoking in 2011, so it was amazing to get an entire hour out of a tank of air!

Bit of a setback here, I finally got COVID. Not too bad, overall, though the first three days were a little scary. My colleagues used their therapist super powers to convince me to call my HMO, advice nurse convinced me to go to the ER. Highest fever was about 102.5, lowest pulse ox was 88 or 89, though that was just for an hour or two. Tested negative, was back to 90% recovered mid last week, but now back to 85%... my lungs just hurt, vaguely, and my normal late afternoon energy drop got way worse... I just slammed a cup of coffee, but I'm ready for a nap anyway! I have a pulmonary function test coming up, and I don't know what to do-- cancel to try to get a better baseline reading, or whether it's more important to find out how I'm doing right now.

I did get in two 25-minute workouts last week, one mainly cardio, the other resistance training, but... I almost feel like that set me back, so I'm going to take it easy for a few more days. Basically, now what it feels like is the vague pain when breathing, worst in the morning and at night, almost normal mid-day, and my usual afternoon exhaustion and headache, only maybe 15% worse. Hard to know what to do, but I'm going to err on the side of rest. Good to be back at work-- I only missed a day and a half of work, though I'm working online for the time being. Will try to get to the office on Wednesday. Wish me luck-- and look forward to hearing how others are doing. This is such a screwball disorder, I have no idea what's 'normal' covid recovery, what's MCTD, or what is a mix of the two. (Except for the lung thing, which is definitely COVID.)

bouregard3 | @bouregard3 | Jan 1, 2024

I am so happy to find this discussion group. I’ve been dealing with MCTD for 2 yrs now. For me the sudden fatigue, hip and thigh pain are the worst part. It has certainly limited what I can do on our little 3acre farm. Recently my wrist has started to lock up and it’s terrible trying to get it to release. My legs also lock up and I’m literally frozen until the muscle releases. I have an appt next week to see what the next course of will be. Any thoughts on staying upbeat are very much appreciated. My family has been wonderful, it’s just nice knowing I’m not alone on this journey!

mctd1972 | @mctd1972 | Jan 9, 2024

In reply to @bouregard3 "I am so happy to find this discussion group. I’ve been dealing with MCTD for 2..." + (show)

The fatigue can be really distracting. Sometimes, symptoms come on hard for a few years, and then back off after a while, or shift. For fatigue, I think the main takeaway for me has been to try to stay in as good cardiovascular shape as I can depending on how I'm feeling, and work in strength training on good days. If my hands are too bad for dumbbells and my back hurts too much for crunches, I'll hike or ride a bike. If my legs hurt, I'll try to do a little weight work. I shoot for 120 minutes per week, but sometimes hit 180... or 80. This part is going to be tough working on a farm-- my guess is that work has to be done when it has to be done, but if you can organize some tasks depending on how you are feeling, that may help.

Also, I'd avoid the tempting internal narrative that if you need to rest, you have to hit the rack for 90 minutes or 2 hours. If possible, learn a style of meditation, or take a nap where you give yourself permission to relax-- completely-- for 15 to 30 minutes. It's not magic, and when you open your eyes, you probably won't feel better at first (though you might.) Try getting back to your day-- you may find it's that two or three 20-minute rest/meditation periods are all you need.

Eventually, after the second blood clot, and when my blood pressure started climbing, I knew I had to change careers, could not work 9-to-5 anymore. High blood pressure, I believe, increases the risk for pulmonary hypertension, and that's the bullet you need to dodge. Took me four years of grad school and clinical training-- really closer to 5-- and was scary to do in my early 50s, but it was the one of the best decisions I ever made. I still work nearly full time.

I also quit drinking and smoking, drinking in 2014, smoking in 2011, and don't use any recreational drugs. The main reason was my health, because alcohol and nicotine go after blood vessels, same as other autoimmune problems. And I think I got a big boost from that.

But the other issue is dealing with the US health care system. At regular intervals, you may encounter medical professionals who insist you don't have an illness, or that it is in remission, or that your symptoms are the result of a lifestyle choice. Being substance free puts you in a better negotiating position. With some providers, you're going to have to put a gentle but firm smile on your face, fold your arms across your chest, and say, "Look, I've done my part to manage my health. I exercise regularly, I don't eat junk food, I don't drink, I don't smoke, I meditate and spend quality time with friends and family. If there's nothing you can do, or you've run out of ideas, or you just don't know, it's fine to tell me that. But I need you and your team to think outside the box keep working this problem. This one isn't on me, I've done my part, though I'm always open to ideas."

You may have to waste some time taking vitamins or trying do-nothing medications-- that's fine, some of them may even work! But do your research. Don't be coerced into taking something if there are 50,000 credible reviews online saying that people took it five times and it ruined their lives. It's okay to refuse treatment sometimes.

bouregard3 | @bouregard3 | Jan 13, 2024

Thank you for all the support and suggestions! I am substance free and my blood pressure is doing great. My latest labs came back good, all markers are within the normal limits. I do take a 15-30 minute break when the fatigue hits usually around 1 pm and most days that’s all I need, and lately it’s not an everyday occurrence. Little steps and a positive mindset helps tremendously!

Langold | @rarelybees2889 | Jan 15, 2024

I wish there was more research on it

jessiek | @jessiek | May 20, 2024

I am so thankful to find this group and appreciate all of the sories, it is helping to read about these challenges we are facing.
I am a 52 yr old woman, healthy lifestyle and eating and after years and years of seeing doctors who diagnosed me with Ankylosing Spondilosis, Arthritis, tendonitis, carpel tunnel, COPD (and I dont smoke), cronic migrains, optical migrains, Hashimotos and Celiac disease, I finnaly was referred to a great rhumatologist who gave me the appropriate tests. She said I have MCTD, Lupus, RA and of course Celiac and Hashimotos, this all makes sense now after being so sick for yrs, I also have cronic GI issues. I was often passed off because of my athleticism and my career as a welder/sculptor.
I have always been a super athletic outdoors person and a proffesional sculptor and gardner. The worst most depressing thing is, I am at the height of my career as a public artist with many great projects under my belt and I feel as if I am at my peak of creativity with so many opportunities coming my way but I find the work of welding so debilitating, I can only work maybe 2 hrs every other day lest I have a major flare-up. Im super depressed that I will have to give up the work I have dedicated my life to, even now I am struggling to complete a project for a beautiful Library.
The other part is Family, My husband, the love of my life has finally gone into remission from metastatic prostate cancer and melanoma, so now he has to see me this way in pain and suffering all the time, not being the happy vivacous me. I lost both parents last year and sadly My mother had a similar autoimmune disease, on a feeding tube for 4 years and finnaly passed due to complications at 78. I am absolutly terrified Im going down that same path. I feel as if Iʻm in a vortex and I canʻt really talk to my husband as he will get too depressed and my stepsons are doing their own things and busy with their life.
I find myself just going and laying down in bed at like 6pm...I feel exausted in pain all the time, I have always been the caregiver and now I struggle to be that person, I feel trapped by this disease.
My husband was cured by an experimental medication during a trial at UCLA, I am hoping there is more research into this condition and will be on the lookout for study trials.

Becky, Volunteer Mentor | @becsbuddy | May 20, 2024

In reply to @jessiek "I am so thankful to find this group and appreciate all of the sories, it is..." + (show)

@jessiek

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@jessiek Welcome to Mayo Clinic Connect. I am so sorry for your diagnosis and your families’ difficulty with the diagnosis. I, too, was shocked when I got an autoimmune diagnosis and how it meant an end to so many things in my life. My sisters and my husband are the only ones who understand. (My sisters have autoimmune disorders of their own,). I know you will find encouragement and support here.
How long ago were you diagnosed with MCTD ? I can only imagine how hard it must be for you to take ‘time out’ from your work as a welder/sculptor. I purposely wrote ‘time out’ because you can and will get back to it in some form. I was so depressed when I couldn’t quilt anymore. And I had been an excellent quilter. I have slowly worked at getting back into quilting because it means so much to me and I know it will help my mood.
Do you have good doctors that you trust? Make sure your main doctor knows all that is going on with you. She can probably recommend a good therapist for you (an excellent idea). And make sure your primary doctor knows how much pain you are having. You need to be working with these diseases, not trying to manage pain.
What do you think is an important thing you can do for yourself this week?

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