mixed connective tissue disease and life expectancy

I was diagnosed last week, What are we to expect? I find a lot of repetitive info on MCTD and do not find a support group anywhere on Long Island in New York. Do we get all three symptons, is one worst than the other? i thought because we had all three, it took a longer time to progress than if we just had one and i thought the medication slowed it down, it doesn't? I have a call into my RA doc and he is going to call me back. This is all new to me so if I ask stupid questions and make dumb statements, it is because I feel like I'm wandering not know what to expect. I feel actually quite good except for a little problems with the fingers and hip and the blood work that points to MCTD. It is just hard to get a grip that I've got this ticking time bomb inside and at some point my life is going to spiral downhill.

Please answer

There is do way of determining how the disease will progress. Every case is extremely different. You just need to take it one step at a time.

Each case is different. I have the same disease. Mine started out as Raynaud's disease alone for about 3 1/2 years when I was 18. I was diagnosed with MCTD after my blood work tested positive for something when I was 21 and it seemed like pretty much like the same thing, just cold hands and feet. But honestly within just a couple weeks the symptoms came on hard and fast. The rhuematoid arthritis affected all of my joints terribly and still do. ( I'm on alot of pills and I have physical therapy twice a week) my immune system is sh*t and my allergies are horrible. Honestly why I'm telling you is because I was thinking mctd was no big deal but the pain I go through on a daily basis sometimes I think I need to quit my job and go on disability because the inflammation In my joints are so painful and happen almost everyday. All I will tell u is please take your pills all eat pineapples and ginger it helps the disease. Also you will be fatigue alot and sometimes every depressed. Pray and take your pills and always visit your rheumatologist !!!! Good luck!

Hi I have MCTD. I was ill for several years before diagnosis, and my rheumatologist (who is one of the best in the country) took his time concluding that's what we were dealing with.

 

I have deforming arthritis (rheumatoid like), fatigue and weakness, chronic systemic inflammation, neurological involvement that ranges from numbness and cognitive dysfunction to gait disturbances and balance issues (these come and go).

I can tell you that looking back, it runs very strongly in my family, men and women,and that most people in my family (bear in mind, they had no idea they had this) were / are dead or completely disabled by their 50s. Deaths have been heart disease related, but also chronically bad medical care-related.

I am in my 40s. I think I have had this my entire life, but it got much worse in the past 6 years. Before treatment, it was a struggle to function at all (although I managed to remain employed full time). Now I am doing fairly well (still have bad days).

I will detail all the things I and the doctor do because I can tell you I am doing MUCH better than others in my family who are not this careful about treatment and regimen.

I am currently on prednisone, plaquenil, and doxycyclene although my rheumatologist has floated adding other things including methotrexate. I have problems with frequent infections so biologics are not a good option for me.

I also take lots of supplements (vitamins B,C,D,E particularly) and iron, as well as probiotics. Most people with autoimmune conditions have stomach issues that are related to inflammation in the intestine and there is strong evidence that this greatly contributes to overall symptoms. Probiotics help with this. This also leads to the need for vitamin supplementation because inflammation in the intestine prevents the body from absorbing nutrients.

I exercise every day (or nearly), regardless of how I feel, and I eat more or less a "whole food" diet--no additives,no preservatives, no processed food. I have nearly eliminated wheat and sugar from my diet. I also wear SPF 100 all over me (hands included) EVERY day. I am highly photosensitive and we realized through observation that UV exposure is a serious trigger. This includes flourescent lighting which emits much more UV than the sun. I have protective filters on my lights at home and at work and I avoid like the plague any location with uncovered flourescent lighting.

I also monitor very closely for infections and it takes heavy antibiotics for long periods of time to get rid of them when I have them. My doctors do regular blood work and I see the rheumatologist about every 6-8 weeks unless there is a significant change.

I can't predict my ultimate outcome, but as I say, I am doing MUCH better than I was and MUCH better than other relatives who don't follow this sort of regimen. Good luck, and I would say, if you can manage it, hold on to your life (including working if you do that) even if it's hard. I think that is a factor in ultimate overall outcome

i have had RA for 20 plus years and found Enbrel was significantly helpful, but got Hepatitis































I cannot take paquenil or methotrexate----I was on Enbrel for RA before I got Hep C--(that has been succesfully treated 3 years ago) and then was diag with MCTD--is that why I cannot get my Rheumatologist to put me back on Enbrel ? I am 66 years old and so sick I wonder if my life is nearly over.
what can I expect in the future?




c

hi i got diagnosed with mctd lupus overlap on 24th dec 2012 and spent 2 weeks in hospital, i have since been diagnosed with antiphospody syndrome and have pulmonary embolism, and kidneys are inflammed i am 32 and struggling emotionally and physically. i am scared for my life the uk doctors one described me as a rare specimen  it has all happened to rapidly. please tell me am i going to die?

i have heard eating pineapples is not good

I have Misconnective Tissue Disease and I read online that 80 percent of people will live for over 10 years.

I was diagnosed back in 2007, at first I imagined I had got Glandular Fever back again, as many of the symptoms were the same, to start with. My doctor tested my blood and reported back the GF was dormant, however there were other symptoms showing, so another serious of tests. This lot came back as inconclusive, so yet more tests were done, then I was sent to a rheumatologist, who done some more tests and then diagnosed me with MCTD / Lupus. I have some days I really struggle, but have to keep going as I have a young autistic son living with me and he needs me. I take several tablets, but am restricted as to what I can take due to being also a type 2 Diabetic as well. At times I have trouble controlling my body temp and can break into a very heavy sweat without warning, day or night, plus feel warm most of the time. I have trouble with my fingers and toes going numb at times, especially when I am driving, so I need to regularly flex my fingers and toes. Before getting MCTD, I had never heard of it and many I have told I have it, are the same. I am on a disability support pension, and even the officer who held the interview for me to get the pension had not heard of it as well. But fortunately, I took a copy of the information about MCTD the doctor gave me, so they took the copy for thier information. Some people think it is an act and I am putting it on, and that includes family as well. Because there is no obvious physical conditions visable, they have trouble believing it.

Hi I'm 30 yrs old, I was also diagnosed with mctd in the past few weeks. My symptoms include raynaud's, fatigue, hair loss. Ive been started on plaquenil, but the medication gives me increased headaches and diarrhea. however, i know i have to continue taking it. Not many ppl know about the disease, and its hard to explain to family members. Ppl assume its not a big deal, because we look normal. But as we know, patients with autoimmune diseases, including mctd are at a higher chronic inflammatory state, which in some ppl lead to increased risk for heart diseases and strokes. It's important to keep exercising and eating healthily because these are things that can decrease risks for these complications.

I was diagnosed with MCTD about 7 years ago. My symptoms where very sensitive skin that started in 

my legs then progressed to the rest of my body. though my torso wasn't effected.

wearing clothing was very painful. Then my joints started aching. Then pain in the bottom of my feet.

After many doctors and test.. Which all have come back normal. I was diagnosed with MCTD. 

I was s prescribed Paquenil and it worked within a week!! I have read it usually takes months to work for most people. 

I also have no side effects from the meds.  

i have always wondered if I was misdiagnosed.  My blood work for 7 years is always normal. I donhave the the classic

symptoms most people seem to have.  I have tried to stop the paquinil but the a symptoms return.  I am finally going for a second 

opinion. I feel like they just gave up looking at to what else it could be.

Thought lately I seem to be having flare ups and the paquinel isn't working. Blood test still normal.

fustrated!!

From what I have read so far the life expectancy is 80 percent live ten years after diagnosis. See the Merck Manual and the Mayo Clinic websites.

Hi there, my name is Derek and i was diagnosed with MCTD when i was very young. I have read that the vast majority of people afflicted with this disease are women but it does strike children as well.. as it did me. I was lucky enough to have found one of the foremost Rumetologists in Canada in the 80's. It was after almost a year of seeing different specialists at the sick kids hospital in toronto . I was on Plaquinil, naproxen and Prednizone for almost 8 years. I am 40 years old and its been 33 years since i was diagosed and treated... I'm not sure if I'm considered cured or just in a long remission. I hope that all of you might have the same fortune that I had.. i consider myself lucky

Hi all, my name is Bev and I was diagnosed with MCTD in April of 2012.  I'm now 40.  I've had compounding issues since my early 20's with migraines, back pain, fatigue, digestive tract issues, and  hypothyroidism.  Now everything is really snow balling... In the past few years, I have been diagnosed with degenerative disc disease of my spine and severe multi level arthritis of the spine as well.  When I asked my family doctor what kind of arthritis, the blood test showed the MCTD.  It is a good thing I asked, because she wasn't going to check and the rheumy I'd seen hadn't bothered to check either.  Ask questions! Especially if your doctors aren't that great like mine :(  I am on methotrexate continuously and have had 2 rounds of prednisone.  I had to quit my job in customer service because of the risk of exposure to bacteria- was a cashier at a truck plaza at the time.  I filed for disability but was denied as most are the first time; the problem is, I'm a single mom and ran out of charitable help from churches and my parents after 5 months, so I had to go back to work full time, at a call center. One month after the MCTD diagnosis, I was diagnosed with fibromyalgia.  All this time, I've been telling my doctor that the pain is 25-7 and so is the unbearable fatigue.  I'm on the max dose of cymbalta and on lyrica too for the pain and for depression.  I still have non-stop pain.  Even trips to the ER for the pain, resulting in doses of morphine and vicodin do nothing to eliminate it.  I get my bloodwork done every 3 months or so and the methotrexate has helped with reducing inflammation of the MCTD by .1   This past January, after 5 MRIs, due to chronic pain in my abdomen and neck and back, I was diagnosed with 2 nerve sheath tumors in my neck, along with the degenerative disc disease and arthritis I already knew was there, and a fluid filled cyst on my spine called a syrinx.  The tumors are benign, thank God, and the syrinx is small enough at this time that it requires no further action. The abdominal pain turned out to be 3 ulcers, after an egd scope.  I was relieved the MRI checking for pancreatic cancer was normal!  These results all explain the pain, which has spread to my hips and knees as well, but I never got help for my chronic fatigue.  My family dr dismissed it as symptoms of the MCTD and fibro which were being treated, and the meds should help with all my symptoms, but don't.  She finally, after over a year, sent me to my neuro for a sleep study to check for narcolepsy after I complained of almost falling a sleep at the wheel and falling a sleep at work, while talking to someone on the phone!  I have just been diagnosed, about 4 weeks ago, with ideopathic hypersomnia, nicknamed excessive daytime sleepiness.  I've tried 4 different meds to treat it but none seem to work well after one or two days of taking it.  This last one, adderall, is supposedly my last shot.  It too doesn't help enough so I have to supplement with vitamin B, C, D3 and caffeine pills.  It is horribly frustating to be in pain 24-7 and exhausted always too!  I wish I could try for disability again but I can't quit working. I'm going to the used bookstore to try to find some healthy cookbooks for healing.  I hope that will help. 

Take care all~

Is the patient's question an overreaction more wisely posed to a clinician familiar with her case?