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

@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!

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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 @ellashab, the post above from @lauramorin was meant for you. Thanks Laura!

John

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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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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.”

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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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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.

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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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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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@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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Meant to say symptoms ….

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

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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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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.

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

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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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