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

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@adronicus

I have mctd my Rhumatologist put me on Simponi Aria
It seems to be working most of my systems have been reduced and has stopped the deterioration in my body
It has been or seems to be a life saver , hope this info helps all , let me know outcome God Bless Cary

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Hi all,
Simponi Aria and Simponi are the same drug, namely golimumab. The difference is in how they are administered.
- Simponi is given subcutaneously, which means an injection under the skin.
- Simponi Aria is an infusion, given intraveneously over 30 minutes (usually)

You can read more about it here:
Mayo Clinic https://www.mayoclinic.org/drugs-supplements/golimumab-intravenous-route-subcutaneous-route/description/drg-20073012
J&J press release http://www.pmlive.com/pharma_news/fda_approves_intravenous_simponi_for_arthritis_treatment_490560

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@adronicus

I have mctd my Rhumatologist put me on Simponi Aria
It seems to be working most of my systems have been reduced and has stopped the deterioration in my body
It has been or seems to be a life saver , hope this info helps all , let me know outcome God Bless Cary

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Thanks for the info, Colleen. I have had 3 doses so far. My right sacro-iliac joint is still acting up, but we’ll wait and see.

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@adronicus

I have mctd my Rhumatologist put me on Simponi Aria
It seems to be working most of my systems have been reduced and has stopped the deterioration in my body
It has been or seems to be a life saver , hope this info helps all , let me know outcome God Bless Cary

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Sorry please just read other blog below offers a link , cary

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@kanaazpereira

Hello @adronicus,

Welcome! Thanks you so much for sharing your insights; I'm certain that Connect members in this group will appreciate it too. We look forward to getting to know you. When were you diagnosed with MCTD? Did you have many symptoms before your doctors could confirm the diagnosis?

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This I tried about 2 years ago it has helped a lot changed my life,, with mctd we can have some not so good days mentally, cloudy thinking, depressed we all know what I am speaking about. In researching any & all info I could get my hands on I come across this device, it’s proven .
So I bought it & tried it after using 1 month starting to feel & think 1000% better, when you have your mind , you can handle Pain. This I will use rest of my life! Got my mind, sound mind , right thinking does wonders for our spirit. My wife said I am like a new person amazing . Just go there web site . This product cost about $600 - 700 best investment I have ever made in my life !

The Fisher Wallace Stimulator® is cleared by the FDA to treat depression, as well as anxiety and insomnia. Used for 20 minutes, once or twice a day, the device works by stimulating the brain to produce serotonin and melatonin while lowering cortisol.

Developed by Fisher Wallace Laboratories,Fisher Wallace Stimulator®, the prescription medical device that is FDA-Cleared and approved in Europe, Canada, Mexico and Brazil. Seven thousand US doctors have prescribed the Fisher Wallace Stimulator® to 30,000 patients since 2009. In clinical trials and practice, more than 70% of patients who use the Fisher Wallace Stimulator® report a reduction or remission of depression, anxiety and insomnia symptoms within one-to-four weeks of daily use. The device works by stimulating the production of neurotransmitters and modulating brain activity, as demonstrated in published studies.
Developed by Fisher Wallace Laboratories,Fisher Wallace Stimulator®, the prescription medical device that is FDA-Cleared and approved in Europe, Canada, Mexico and Brazil. Seven thousand US doctors have prescribed the Fisher Wallace Stimulator® to 30,000 patients since 2009. In clinical trials and practice, more than 70% of patients who use the Fisher Wallace Stimulator® report a reduction or remission of depression, anxiety and insomnia symptoms within one-to-four weeks of daily use. The device works by stimulating the production of neurotransmitters and modulating brain activity, as demonstrated in published studies.
Hope this helps , God bless ps not a salesman for this company all I know
I once was down ,& in brain fog now I think clearly seldom down , up & moving .....

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What do most of you do for Pain ? Cary

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@lauramorin

I was diagnosed with MCTD in 2013 and misdiagnosed with fibro many years earlier. I was most recently and correctly diagnosed with sjogrens/lupus. So this can be a tricky diagnosis but definitely manageable! First and foremost find an rheumatologist that will become an advocate and if not a rheumy a good internist (that's what I ended up with) and your are a busy lady as was I and that's actually a huge benefit that you do not want to forfeit. Even on your worst days, do not give in. Pull up the big girl pants and forge ahead. You will feel better for it, I promise. Go to bed early if you have to but do not give into the couch, its your worst enemy. Beware of the drugs....prednisone and plaquinil for a long time are not your friends. Also I don't care what the TV says Cymbalta is like heroin it will be the worst detox of your life. So is the other drug they push on TV for Fibro, don't take that one either. Methotrexate is
another tough drug but can be helpful. Exercise and a low dose anti imflammatory are your best friends a good diet and good sleep and again do not heed to the couch/bed on bad days. Keep in touch with your doctor and pay attention to you. Also helpful is heat I have found. Just be good to you and do not get over tired I have found that I have had to learn to say NO! to a lot of things in life. I worked full time, volunteered almost full time, had two travel ball players (one national) a husband that traveled year round and I learned to draw hard lines in the sand. I also learned to listen to my body when enough was enough I listened. I will help I promise. Flares are tough but remission is wonderful. If your doctor sounds like he is full of crap he probably is - find another one, this is largely uncharted territory, MCTD is just waiting to become something else typically RA, Sjodrens or Lupus. Take care and be good to you. I am happy to talk or listen anytime, PM me, my auto immune disease took on a whole journey that became a mayo study, too long for here. I wish you well. :0)

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@johnbishop wow john l have read some of the post. And after l had my surgeries especially the last one for foot drop thats when l started having the problem. I was told it was neuropathy so they gave me tramadol which l try so hard not to take unless l am in so much pain l want to scream. I remember when l had my back surgery l didn't know when l came out of surgery. People came to visit l dont remember anyone. My best friend came as l was asking here did l say something to you l shouldnt have? She said no. And then when l had my foot surgery my doctor said he had to call my gastroenterologist to find out about the meds they gave me in surgery and he was scared when he was telling me the story. He told me when l came to see you, you didnt know who l was or my name. So now l was sent to my first rheumatologist and l didn't know why or what doctor sent me. Then when l went to here she asked me the same question. Then she looked in the computer and found out the whole story. Then she tested my ana twice and told me it can come back positive but really can be negative. Then when l went to the mayo clinic my counts was higher but they didn't tell me to follow-up with a rheumatologist at home instead the neurologist there had me go to 2 psychiatrist and then had me scheduled for the third but cancelled it. Then she said you should go to behavioral therapy but l think she was confused herself because when l first saw her she said lve be a neurologist for a long time and she gave me a website for conversion disorder. Which now they changed the name but it still the same. And l said to myself you may be a neurologist along time but my God is the great physician and he know more than you. So l think they were a little confused because they said l had the symptoms of autoimmune encephalopathy but its not showing up. Well l knew l had that because l had the liver procedure. Then the vascular doctor told me there wasnt any blood flowing to one vein. He was going to talk to his colleagues and if l needed my procedure done again then they would schedule me to come back. They scheduled me to come back l thought l was going to.have the procedure done. I call the department and the nurse said no its a consultation. My grandkids came all the way from Tennessee to have the first Christmas with there grandparents and for one day l saw them and then l was heading to the mayo clinic. I went for the consultation and the next day l.checked out the hotel to come back home. Then l saw my grandkids forban hour before going home to go sleep after the long drive. And the hepatologist out there told me everything l was going through for 4yrs and the doctors here thought l was crazy. So it was good to see him but l wish it was at home instead of a 12hr drive. And then l went to the new rheumatologist and he thought l was out of my mind coming to him since l went to the Mayo Clinic and they didnt refer me to a new rheumatologist or to tell me to get one. So then he ran all these blood work and he thought he wouldn't find anything he was just doing it to please me. And then set me up for a return visit for 6months. Then his nurse calls and says he was sending me a prescription to my pharmacy. Now he wanted to see me in 2months. Now l do like him in spite of what he said because it was my first visit with him. And as l told you before l was to see him today but because of the weather l see him next week. But like l said before they don't know more then God. And l know l will be healed soon because with over 20yrs with cognitive and memory issues to now writing a book and going back to school. Its even shocking my PCP how l got my memory back. He just looks at me everytime l see him just to get shots. I havent seen him for an appointment since February last year and he hasn't seen my records from the Mayo Clinic and they didn't send him any because l never told them about him. So l guess l can have autoimmune encephalopathy and then also have mixed connective tissue? I am not sure but a s l was reading some of the post you can have more then one. And l am not going to let him give me anymore meds. I will just use my compression stocking and continue to take the tramdol like l said before because when some pf the doctors were taking me off the meds. I haven't been falling and my confusion has cleared up. And now l am driving without fear like l was before because of not driving for 2yrs. I have been reading Joseph Prince book Live the let go life and l know you know about that. And now that my sister is going through her issues l told her to read it because she is having some memory issues and shes afraid. Ive been there so l know what's she's going through even though she didn't know what l was going through. And l know it fear you struggle with when your doctors don't listen or have the time to research or talk to their colleagues to learn. You know because you help us all and like you said you have to be you own advocate even though you are paying them and you get no answers. But so far l am getting some doctors who are not afraid to listen and sometimes be wrong and learn from there patients. Its hard to find them butbwhen you find them just hold on to them. Your the greatest and God sees all you do....

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@lauramorin

I was diagnosed with MCTD in 2013 and misdiagnosed with fibro many years earlier. I was most recently and correctly diagnosed with sjogrens/lupus. So this can be a tricky diagnosis but definitely manageable! First and foremost find an rheumatologist that will become an advocate and if not a rheumy a good internist (that's what I ended up with) and your are a busy lady as was I and that's actually a huge benefit that you do not want to forfeit. Even on your worst days, do not give in. Pull up the big girl pants and forge ahead. You will feel better for it, I promise. Go to bed early if you have to but do not give into the couch, its your worst enemy. Beware of the drugs....prednisone and plaquinil for a long time are not your friends. Also I don't care what the TV says Cymbalta is like heroin it will be the worst detox of your life. So is the other drug they push on TV for Fibro, don't take that one either. Methotrexate is
another tough drug but can be helpful. Exercise and a low dose anti imflammatory are your best friends a good diet and good sleep and again do not heed to the couch/bed on bad days. Keep in touch with your doctor and pay attention to you. Also helpful is heat I have found. Just be good to you and do not get over tired I have found that I have had to learn to say NO! to a lot of things in life. I worked full time, volunteered almost full time, had two travel ball players (one national) a husband that traveled year round and I learned to draw hard lines in the sand. I also learned to listen to my body when enough was enough I listened. I will help I promise. Flares are tough but remission is wonderful. If your doctor sounds like he is full of crap he probably is - find another one, this is largely uncharted territory, MCTD is just waiting to become something else typically RA, Sjodrens or Lupus. Take care and be good to you. I am happy to talk or listen anytime, PM me, my auto immune disease took on a whole journey that became a mayo study, too long for here. I wish you well. :0)

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Hi Laura, Thanks for sharing. Just wondering why you say Plaquinil are not your friend? I was on it for bout 2 years and feel like it made me worse, especially now after getting off it. While now at the same time, nervous I am not on it, as I hear with MCTD w/lupus type symptoms, I should be. Overall, feeling great without it, but vertigo just decided to settle in the last few days. Curious to your reasoning behind it, though. Thanks again.

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I was diagnosed with MCTD in 2012. It surely has not been an easy road for sure not. You learn hpw to take one day at a time literally. In the back of your mind you will wonder when am I going to have a gpod day. Or is this going to be a good day for me. This disease will get you down for sure and you will always think what can I do to make it better. We will have this disease for the reat of our lives. And we have to learn to deal with it. Fatigue is the number one thing with me. It sucks to have this and woth someone that doesn't have it qill never understand why you are the way you are and no matter how many times you explain it, you will always say the same thing. All you can do is pray that things get better and hope you can find a way to feel human again. Im not saying this rp get you down. I am saying it because like you WE live it everyday. I hope things get better and we can find a way to learn to live with tbis disease. I hope you get ypur spirit back. Do something you enjoy for you. That's what I try to do. Hope I said something to help you!

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Welcome to Connect, @baumgardtrose,

Thank you so much for sharing your insights; I know fellow Connect members will appreciate it, as well. Fatigue seems to be such a debilitating symptom; may I ask how you deal with fatigue? Do you have any suggestions or tips as to what works/what doesn't?

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