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Posted 5/14/2012 10:08 PM (GMT 0)

Hello, All!  This is my first post on this Forum, and am so happy to have found it!  I have a quick question... does anyone know:  If you have Mixed Connective Tissue Disease, does this mean that you have Lupus?  .. Or does it mean that you have a disease that is like Lupus?  (Going through diagnosis now, and am doing research.)

Thank you!! 

Posted 5/14/2012 11:12 PM (GMT 0)
They both fall under autoimmune diseases. They're like cousins..... :)

But we have people with MTCD post here too.
Posted 5/15/2012 2:01 PM (GMT 0)
Hi Logansgrammy,

Welcome! You have come to a great place for encouragement and support!

I have MCTD and the doctor treats it just like Lupus. I take Plaquenil, Methotrexate, Folic Acid, Prednisone, Mobic. Just to name a few.

I believe that MCTD is a mix of three different autoimmune disorders...can't remember what though (brain fog at the moment.)

There is a member named BSIME who will know more about it than I.

Take Care,
Mary Ann
Posted 5/15/2012 5:58 PM (GMT 0)
Thank you, Joy! :-)
Posted 5/15/2012 6:07 PM (GMT 0)
Hi, Mary Ann.  It's very nice to meet you! 

It'll be a month before I see the Rheumatologist again for an official diagnosis.  I've had Lupus symptoms for 20 years, but my bloodwork has always come back normal.  However, a week or so ago, my bloodwork came back with positive ANA and high RNP.  From everything I've read, the RNP points to probable MCTD.  I guess what has me confused is that some articles refer to the fact that you have Lupus "features", while other articles suggest that it's actually Lupus, Scleroderma and Polymyosits.  So from what I read, it's your understanding that it is actually Lupus. 

I completely understand brain fog!  I also have Fibromyalgia, Sjogren's, Degenerative Disc Disease, Scoliosis, COPD, IBS, and a few other things. 

I wish for you one of the "better" days today, as I do everyone here!  I definitely know we take things a day at a time, broken down by an hour at a time, a minute at a time, etc.  LOL 

Be blessed, everyone! 

yeah  

Posted 5/21/2012 2:21 AM (GMT 0)
MCTD by definition is lupus, scleroderma and polymyositis but every case is different.  Not everyone gets the same set of symptoms.  Some present with lupus and never get the others.  I started with lupus, then pm, but the only thing possibly linked to scleroderma is raynauds.  MCTD is a distinct disease that is an overlapping connective tissue disease so it is even more complicated than just lupus. 

Either way, lupus or mctd with lupus symptoms, you have lupus although with mctd it is part of the whole, not the whole.  With mctd you might have a lot more.   Autoimmune diseases are not like others where a specific pathogen causes a specific set of symptoms.  AI diseases happen to someone with a set of genes that predisposes a patient to a disruption/misdirection of their immune response.  Some sort of trigger (a virus, bacteria, or exposure to an environmental trigger) causes the immune response.  In the case of an overlapping disease things get very complicated and blurry.

To further complicate the discussion, mctd can actually embody more than just the 3 diseases.  Many patients have a less well defined overlap disease and are often diagnosed with undifferentiated connective tissue disease.  UCTD is a catch all for these less well defined conditions.

Regardless, these overlap diseases or lupus are treated in a similar manner but it is important to diagnose the cause of your symptoms precisely.  MCTD is not diagnosed unless the anti rnp antibody shows up in your labs.  It took a while for my docs to get a confirming diagnosis but they had long deduced what I had and were treating me aggressively for it.

Bill

Posted 5/22/2012 4:07 PM (GMT 0)
When I was first being tested nothing showed up positive for me in blood work but I was severely iron deficient and anemic. After that was fixed I was sent to my first rheumy because I had burning in my thighs along with weakness, fatigue, etc etc...Ibuprofen did not help despite large doses. My labs were still negative for months after all this and then one time my ANA came back low positive with a speckled pattern. The local rheumy's did nothing for me so my 2nd primary(I switched because the first was no help after treating the anemia and just wanted to continue with ibuprofen because tests had been negative) after seeing the ANA positive and my CK/CPK positive a few times referred me to a University 3 1/2 hrs away. I went to the Rheumatology clinica where after 2 visits they concluded it was AI in nature and put me on Naprosyn. Of course this did not help at all and after a few more visits the Plaquenil was added.(This was back in 2008.)I was labeled with UCTD until May 2011 when things like low complements became frequent and I had a few episodes of pleurisy. I'm now labeled with SLE and am on all the meds listed below. Things still aren't controlled and on top of it all my adrenals aren't functioning and I can't come off prednisone so I'm off to another specialist June 6th. There's a post about that on here as well. I wish you all the best and hope you start feeling better soon! *hugs*

-LadyBug
Posted 5/23/2012 5:23 PM (GMT 0)
I really appreciate everyone's input and support!  I am definitely having a tough time.  I am so filled with pain and weakness that discouragement has set in this week.  I've read a few posts here on MCTD and it certainly sounds like me.  However, I have learned over the past 20 years that no matter what I think, if the doctors don't diagnose it for one reason or another, I only get frustrated. 

I was first tested for Lupus 20 years ago, and because the symptoms keep coming back, have been tested 4 or 5 times since then.  The labwork always comes back okay, so I put Lupus out of my mind and move on.  I'm at a point where I've lost faith/hope in the doctors figuring everything out and getting me help, so I just try to deal with it.  Some days I'm more positive mentally than others!  LOL

I have been diagnosed with Fibromyalgia, Sjogren's, Degenerative Disc Disease (and many other spinal issues), Scoliosis, Chronic Fatigue... and probably other things I can't think of.  LOL  Dealing with so many "invisible" illnesses has caused frustration from sister/mother judging me.  As a result, I'm thinking of writing a book filled with short clips of things people suffering from disease want others to know and understand.  I love to write, and need to find a way to give back.  :)

Currently, I have so much joint, nerve and muscle pain that I'm not very functional.  Even my arms hurt too much to use.  My legs hurt/burn a lot when walking, including hips/knees.  Any ideas or suggestions?  BTW if anyone has things they think would be helpful for my book, let me know!

Hugs and Peace to you all! 

Posted 5/23/2012 5:32 PM (GMT 0)
Welcome LogansGrammy! I too have a MCTD and have been told by several Rheumys that it often may begin as this diagnosis and inch its way toward Lupus, RA, Scleroderma, etc. But you are in good hands with a well-trained and "marinated" Rheumy. We are often their most frustrating of patients because it presents with such diversity and often they have to just pick and choose the meds going thru 5,6 , 7 meds before you get a good response, sadly. Also, you are in good hands here with Bill and Joy especially. Very knowledgable and true.
Not that anyone should go thru this but you are fortunate to at least be diagnosed later in life. When I see posts from these teens and 20 somthings it just breaks my heart! I was 36 when symptoms began and for first time in 6 yrs am in remission! Please be close to your MD asking many many questions, read everything you can, and keep up hope! I believe part of what we need to heal is within ourselves..you just have to know how to access it! email me anytime - my email is in profile. Love and hugs to you!
Posted 5/23/2012 5:45 PM (GMT 0)
Well LogansGrammy I think it is wonderful you are writing a book. I too love to write so if you need any help please let me know! I am home all day with my 2 children. I'm great with poetry/song writing,etc. Since we both have experience it would be quite fun I think lol

Angelina, thank you for the heartfelt sympathy for those younger who have to go through this. I am going to be 25 in November. I started seeing doctors and really pursuing this back in 2008 not long after I had my son. It's taken a while to get things figured out because I too as stated above started out with UCTD. I've had the same arthritis/leg ache since I was 7 years old which would wake me up at night not to mention lots of infections growing up, photosensitivity to the extreme my whole life, anxiety, depression, etc etc. By the time my rheumy heard my story no wonder it took so long to figure out. I was 20 years old and so I had to describe the last 20 years to her through appointments and I live 3 1/2 hours away. Now we keep in contact by email and I have a local rheumy I keep tabs with in case something goes awry. Gotta love all the docs! lol

Hope you all are well today!...or at least better today than other days. Take care and God Bless.

-Lupie LadyBug aka Brittanee

P.S. my email is [email protected] ...feel free to email me anytime as well!
Posted 5/23/2012 6:03 PM (GMT 0)
:) You Two Just Made me SMILE!!!
Posted 5/23/2012 7:30 PM (GMT 0)
Well, just picked up bloodwork. Anti. Nucler Ag RNP Antiboies = 3.6 (normal range 0.0-0.9) ANA Direct/ Anti-DNA (DS) = 2

Mean anything to anyone? LOL
Posted 5/23/2012 7:31 PM (GMT 0)
BSIME - You have helped so many people here! Thank you on behalf of so many!!!
Posted 5/23/2012 8:39 PM (GMT 0)
http://labtestsonline.org/understanding/analytes/ena-panel/tab/test (Anti-RNP)

http://labtestsonline.org/understanding/analytes/anti-dsdna/tab/test (Anti-dsDNA)

These 2 links will explain the tests for you LogansGrammy! Hope this helps clarify any questions you might have!

-LadyBug
Posted 5/23/2012 9:35 PM (GMT 0)
Positive result for anti rnp antibodies probably means you have mctd. It also is present in some cases of lupus but I think some of those cases just have undiagnosed overlapping connective tissue disease like mctd. The pains you describe in your joints, legs, etc are similar to what I experienced the first 6 months (the pain was horrible, muscles, all my joints, and I swelled up like the Michelin man) until meds brought my immune system under control. Maybe you posted the info, but are you taking any controlling meds? Sounds like both lupus and polymyositis symptoms.

Thanks for the compliment. I just try to help steer others through the ordeal of lupus and or myositis diseases.

Bill
Posted 5/24/2012 12:07 AM (GMT 0)
Hi, Bill! Did you run a low-grade fever most days? I have been monitoring mine for a week or so and it's usually low-grade or below "norm". I'm currently taking Gabupentin. I was on a high dose of Lyrica for years, but it started having adverse effects. I also take Nucynta (Class 1 Narcotic) for pain. I am so hoping for a clear diagnosis so that I can get on meds and become more funtional. I'm trying not to get my hopes up, though, as the "three ring circus" can be disheartening.

I truly admire your willingness to share and help others... that follows my own heart. I hope and pray that I'll be able to do more physically soon, and can bless others as well!

Shaun
Posted 5/24/2012 2:22 AM (GMT 0)
Never had a problem with fevers. I think many do because their immune system is screwed up (medical term) and they have low grade infections. Best treatment is probably to get the immune system under control although that process is a catch 22. Controlling meds subdue the immune system but also make you more susceptible to infections. Interestingly, even though on controlling meds I did not have so much as a cold for 5 years and then got a nasty sinus infection. Nothing since then. Every case is different.

None of the meds you mention have anything to do with controlling an auto immune disease. If you are diagnosed with mctd or lupus your docs will probably put you on something like plaquinel or prednisone if your symptoms are more severe. Since you have had problems for a long time don't expect a miracle to happen in a short time.

Hope you can get past diagnosis hell and begin a treatment.

bill
Posted 5/24/2012 3:35 AM (GMT 0)
I never paid much attention to the temperature in the beginning so for the first few years I couldn't tell you. The past 2 though I have and notice I do run low grade fevers with my flares as well as infections. The odd thing is I don't get your typical symptoms with infections either. My UTI's and kidney infections never had many symptoms to them or when they did I was in so much pain already from not being on meds due to intermittent diagnosis that I couldn't tell the difference. Now every time I start to feel sick I pull out the thermometer. My "normal" temps run in the 97s which is lower than most normals of course. When they get to be over 98.7-99s that's a fever for me. Anything 100 or over is bad news. In fact I'm currently running a low grade one now off and on due to whatever sinus thing I have going on and a possible UTI(with no symptoms other than bacteria in my urine)and maybe a flare up starting, I don't know. With the meds I'm on suppressing everything I can't tell at this point...not until we get some other things figured out anyway.

You are lucky to have the meds for pain(narcotics...even though I don't like taking them in the beginning it was so horrible i couldn't sleep and was in tears a lot of the time)...I didn't get anything but Naprosyn and then Neurontin/Gabapentin which did not work at 900mg/day, then Cymbalta which gave me panic attacks...I was also put on Plaquenil which didn't help either although I'm still on it. Then my daughter's pregnancy helped the lupus but caused a seizure so I was put back on anti seizure meds after being med and seizure free for 7 years. And after my daughter was born it made the Lupus worse and I got pleurisy which put me on prednisone that i've never been able to come off of which is why i'm seeing the Endocrinologist and I'm not also on Methotrexate/Chemo which were waiting to see how that works since it's only my 6th week on it.

*deep breaths* okay i'm done now lol....I guess my point was is it takes time to figure it out and while i know time is the last thing you want to have to deal with as far as waiting and being miserable, it just manifests itself in such uncertainty that time is the only way to make things add up to the clearer picture and be able to try out what works and what doesn't. Were always here to lean on and God is always listening. There were many nights I laid in bed in tears and praying. I wish you the best dear. I've been there...take one day or one hour even at a time. Sleep if you can. Stay positive.

Sending light, love and prayers,

-Lupie LadyBug
Posted 5/24/2012 6:11 AM (GMT 0)
Oh my goodness... this forum is already changing from overwhelming to comforting! These posts are helping me to realize that I don't have to be alone in this. Thank you so much, all of you!

Lady Bug ... I recently had a UTI at the beginning of this flare up! I didn't even know I had one either. It was found in the ER when I went for help with abdominal pain. Oh my goodness... there must be so many things related to this that I haven't even realized! I had my gall bladder out a few years back, have IBS, nodules on my thyroid, and acid reflux.... I wonder if this is all related and the puzzle pieces are finally going to fall into place? I know this illness can affect so many things.

I'm so sorry that you've had to go through so much. It's so exhausting just to think about, isn't it? I really appreciate you sharing some of your story with me. It's truly helping my spirits to remember that others are there with me and understand.

It sounds like you have been through a lot! Hugs and thanks are being sent your way! I'm looking forward to getting to know one another better and better!
Posted 5/24/2012 11:45 AM (GMT 0)
Just wanted to welcome you to the forum! You found a good group here who is very helpful with questions you might have during this time. Sorry to here you are here but hopefully we can get you all the help you have questions on :). I know this forum helped me so much when I first found it!
Posted 5/24/2012 2:09 PM (GMT 0)
LogansGrammy,

I am glad that my story helped you and in more ways than just one. I went through the same process as you are right now with the realization that you are definitely not alone and that everything you have gone through in your life has some link to your disease.

Major surgeries and infections,etc can get the ball rolling on your disease as well. I actually had an infection before mine got worse after the burning pain started. It wasn't the flu but they thought it was Mono. The ER never called me and told me what it was but my sister had had it twice and had her tonsils removed because of it, since it kept coming back. So, I was pretty sure that was it. I had 103-104 fever, my entire body hurt and i literally could not move at all or these sharp stabbing intense pain would shoot all throughout my body and I would cry...even crying hurt! Not to mention my throat was so swollen and painful that I was having trouble breathing. It was horrible. There was no way I could eat or drink. My head hurt so bad I was falling over sitting up...forget standing!....

I called yesterday to my PCP's office to try and get an appointment to get a culture since my labs had showed bacteria and since I have these sinus symptoms but I can't get in till June 5th! So it's watch and wait. I'm having the low grade temps so we'll see what happens I guess.

I pray you're feeling well today! Take care and God Bless.

-LadyBug
Posted 5/24/2012 7:22 PM (GMT 0)
Bill... I have one more question. (Sorry!) Do you have any suggestions of what would help me walk without so much pain/weakness? I have a wheelchair, but definitely need more excersise. Have you ever tried leg braces or anything like that? Do you know what type of doctor I need to see? Same question about my arms.

Thanks again!!!!
:)
Posted 5/24/2012 7:55 PM (GMT 0)
In early 2006 I went through extensive physical therapy as both an in and out patient.  In the beginning I was quadriplegic and had PT, OT, and speech therapy.  These therapies resturned me to a vertical position, made me functional, and by continuing on my own I lead a fairly active life now despite missing about 35-40% of my muscle cells. 

My recommendation would be to talk to your rheumatologist although he/she might not know that much about recovery.  Your disease does not sound like it is under control and treating the symptoms like pain is not the way to proceed.  So, the first thing is to find a course of treatment that will control your immune system.  Secondly, if it is determined that PT/OT is appropriate you need to be evaluated and then treated.  Usually, but not always, the best places to get treatment are in the out patient clinics of a rehab hospital where the therapists are experienced treating various neurological and neuro muscular disorders.  The doctors that specialize in recovery are call physiatrists and any rehab hospital will have them on staff.  If your condition is severe then it would be beneficial to see a physiatrist to supervise your treatment.

As for aides like leg braces, that should be a last resort when recovery is not possible or there is a safety issue and should be done after a thorough evaluation.  If you start using braces of any kind it will further weaken your muscles.  Weak and inflammed muscles might be the source of your pains so weakening them further does not make sense.  Bottom line is that you need to seek effective treatment of your immune system and also find a physiatrist to address your physical deficiencies.

Bill

Posted 5/24/2012 8:38 PM (GMT 0)
Thank you, Bill!!!!!

 

Posted 5/24/2012 11:22 PM (GMT 0)
You could try one of those sit/walkers. It looks like a 4 wheeled walker with a seat. You can use it to lean on as you walk and have it available to sit and rest when needed.

My trigger was Acid reflux surgery two years ago.
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