1. < Autoimmune Diseases

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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Lauramorin | @lauramorin | Jan 8, 2018
In reply to @lauramorin "I was diagnosed with MCTD in 2013 and misdiagnosed with fibro many years earlier. I was..." + (show)
@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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Hello (@johnbishop), thank you. I am always happy to share what I have learned if it helps someone else. And yes, I wanted to specifically address ellashab but since this is the first time I have posted I was not aware that I needed to put her name prior to my post until I read your response, (thank you) and then I was not able to go back and edit mine so I hope she sees it.
This is the first I have seen of this page, maybe I will come back and visit :0) have a wonderful day!

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 8, 2018
In reply to @lauramorin "I was diagnosed with MCTD in 2013 and misdiagnosed with fibro many years earlier. I was..." + (show)
@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 @ellashab, the post above from @lauramorin was meant for you. Thanks Laura!

John

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jan 11, 2018
In reply to @lauramorin "I was diagnosed with MCTD in 2013 and misdiagnosed with fibro many years earlier. I was..." + (show)
@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)

Jump to this post

Hello @lauramorin,

I'd like to add my welcome to @johnbishop's, and also want to thank you so much for sharing your experiences. Although we haven't heard from @ellashab for awhile, we sincerely hope she is keeping well.
Members in a discussion do get notified with each post, if they are still following the discussion. But it's always helpful to tag or @ mention members, especially if your post is meant for a certain member.

I also hope you will continue to share your thoughts and ask questions; It always helps to hear from someone who has “been there.”

REPLY
CalcinosisBaby | @kgoodwin9 | Jan 15, 2018
In reply to @lauramorin "I was diagnosed with MCTD in 2013 and misdiagnosed with fibro many years earlier. I was..." + (show)
@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)

Jump to this post

I agree totally as I went 4 years with a "rare" autoimmune that doctors don't really know for sure. I wish there was more research on autoimmune. Make sure you don't have any allergy's or infections. Primary should check gall bladder and all of the normal things that can go wrong. Many times rashes from allergy's are blamed on auto-immune so document when you take medications and anything that results. Even if it takes a couple weeks to show up. Even document vitamins you take, etc.

REPLY
adronicus | @adronicus | Jan 24, 2018

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

REPLY
7 replies
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jan 26, 2018

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?

REPLY
1 reply
adronicus | @adronicus | Jan 26, 2018
In reply to @adronicus "I have mctd my Rhumatologist put me on Simponi Aria It seems to be working most..." + (show)
@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

Jump to this post

Meant to say symptoms ....

REPLY
thedinnymurph | @thedinnymurph | Jan 27, 2018
In reply to @adronicus "I have mctd my Rhumatologist put me on Simponi Aria It seems to be working most..." + (show)
@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

Jump to this post

I have never heard of "simponi aria"....can you tell me about it? Many thanks. I also hae MCTD along with primary srogrens.
Thanks

REPLY
marylou705 | @marylou705 | Jan 27, 2018
In reply to @adronicus "I have mctd my Rhumatologist put me on Simponi Aria It seems to be working most..." + (show)
@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

Jump to this post

I just started with Simponi. It doesn’t say Aria - are they different? Such relief after Otezla, which made me really ill. Now fighting with Insurance to get Simponi! This month cost me $1500.

REPLY
adronicus | @adronicus | Jan 28, 2018
In reply to @adronicus "I have mctd my Rhumatologist put me on Simponi Aria It seems to be working most..." + (show)
@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

Jump to this post

Don’t know ? I’ll check and get back to you.asap

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