Welcome To www.LupusMCTD.com

 clbrte Hi My name is Kate. I'm 27 and was diagnosed with Mixed connective Tissue Disease in Dec 2007. I have associated myositis and arthritis, my fingers are swollen and I have Raynauds aswell. I have recently had pericarditus and was in hospital. I seem to have one small illness after another such as mouth infections, stomach problems and have no energy and I'm always tired. I a taking nifedipine,hydroxychloroquine and naftidrofuryl. i have most recently had a rash all over my body and virus like symtoms, which I'm not sure is connected or if I am just more prone to illness. Does anyone have any ideas. I'm having blood tests next week but I only see my consultant in October. My doctor i am seeking in the mean time doesn't know much about mixed connective tissue disease but has signed me off work in the mean time.

I would love to here and chat to other people who have mixed connective tissue disease or people who know about the disease. Please tell me you opinions and stories xx

This illness is so complex with not one big symptom and I feel alone  gsad

 wlcme  Kate~

Please know that I understand your worry, and frustrations. Yes, it is baffling how our bodies can experience so many types of inflammation. The rash that you had, may have been virus related or MCTD related. If the rash is MCTD reelated that would suggest dermamyositis. It appears that many of us are prone to infections~ this is an area of frustration for me!


Most of us here have a lot of overlapping illnesses, so please know that you are in good company here. There is a ton of medical related information to read and educated yourself with here.

I'm assuming that your GP/PCP placed you on those meds, thank goodness that you have some treatment to hold you until you see the specialist. If your current medications are not effective enough at decreasing inflammation in your body the specialist may add one or more meds to your daily cocktail. The specialist will be much better armed with info about MCTD and its varied treatment/s. For example, your fatigue could  be caused by a double wammy of anemia and inflammation. Your doctor will see this in tests, and treat you accordingly. Be patient, and know that answers will be on their way.

We all have little things that we do to make us feel comfortable when the pain and fatigue are on. Like resting more, heating pads, rice socks, warm showers.

 Please browse this site, and  post us any time. We are a community dedicated to informing other's, providing support and offering friendship. Do know that you are not alone.

Pain free and better days ahead, Kate, and you don't have to deal with this alone!
Gentle Hugs,
Kim

Hello KAte,
Thank you for posting and joing us.
I'll post th elinks where we have already told our stories, so that way you can read about us, then post questions to our posts.

Geez you girls keep getting younger & younger. You would be a great person to talk to a few girls your age here. Such as Angel, Lacy Ann, my mind just went blank please excuse me. Today is not a good day for me and my thinking and trying to get work done.

Here is some of our links, please read them (I'm sure you'll see yourself in these stories) post to them, and if you are intrested in having a Buddy 2 Buddy chat, let us know and we'll get you scheduled with someone close to your own age. OK?
Here is some links for you to read about us:
Questions about MCTD
http://www.lupusmctd.com/index.php?board=7.0
2008 Members THreads
http://www.lupusmctd.com/index.php?board=88.0
What is MCTD?
http://www.lupusmctd.com/index.php?topic=1088.msg5561#msg5561
Photos of us with MCTD
http://www.lupusmctd.com/index.php?board=57.0

Kate,
Here is a link to a fellow patient who does blogging and is a writer.
This story she done on me
http://journals.aol.com/lrttklly/LupusLeftovers/entries/2006/07/17/profiles-in-lupus-kathy-walters-pays-it-forward/1479?numComment=all

I have so many health issues some not related to MCTD such as my Cervical neck issues I have the MRI results from last Monday posted in my thread called "Chatty Kathy" is located uner 2005-06 members if you care to read that. I take photos and pst so you might want to scroll through mine just to see what all I have taken photos of.
Hope it helps sharing with you.
Kathy

Thank you both for your replies. Your kind words have really helped. I will have a look at the website and read the links suggested. I am really glad I have found this group

Lots of smiles

Kate
x litbflys

If you have any questions, feel free to post. I'm generally online during the day, except to go to the Dr

Hello Kate..
My name is Clare..I have MCTD..all of them.. with the progressions....when I was on some of those meds..i had a bad rash that itched all the time all over..it may be allergic reaction but you would have to remember if it started with the meds...The doctors are also learning a lo fro us because they have not done any significant research in clinical studies with patients lwho have MCTD with progressions...
I am sorry that you are going through all this pain and feeling downcast...try to hang out with some positive people..sometimes our relatives and family do not understand because thry loo at us and because we do not look sick they think we are making it up...fooyey...I hope you will find that this is family on here and we care about each other...i am certain that if you keep coming you will develop some nice friendships as I did...
Take good care of yourself Kate..find a place in your subconscious where you can go to and just breathe when things become overwhelming...I pray for a good evening for you..may Jehovah the Most Almighty God keep you strong and safe in this journey....
Many hugs..so long..Kate...

 hppygrlmil hello Kate I don't think i have welcomed you yet  chkbrd there you go welcome aboard

 prplbtfy Just bumping up your thread to get more responses for you.
Hope you are doing well,
Kathy

 CandleSmilie welcome kate123 my name is *Crockett* nice to meet you please do not feel alone as everyone here has the same feelings you are feeling.
Post often so we can get to know you perhaps help you out.
Welcome aboard to a wonderful group  LUAW

hi kate,
i also too have mixed connective tissue disease , just been diagnosed ! if you ever want a blether just add me!
just joined this site yesterday , hope your having a pain free day !
speak soon
x

Hi Kate

     I am a newbie here and I like you, have mctd. I was diagnosed about 7 yrs ago. I'm here if you need a friend.  :)

Here is some links for you to read about us:
Questions about MCTD
http://www.lupusmctd.com/index.php?board=7.0
2008 Members THreads
http://www.lupusmctd.com/index.php?board=88.0
What is MCTD?
http://www.lupusmctd.com/index.php?topic=1088.msg5561#msg5561
Photos of us with MCTD
http://www.lupusmctd.com/index.php?board=57.0

If the links no longer work it's because I recently moved around a few catagories. Just let me know and I'll fix it or get you some better links that are about us talking about what all is wrong with our health and the challenges we have went through or we are facing now.
Glad you are here!
Kathy

WELCOME and hello to Kate and the other brave newbies  wlcmtrio

We love and always welcome new voices, new lives and new experiences to share, support and learn from each other.

My name is Holly.  I first joined a LUPUS board I found on AOL back in 98 or 99 I don't remember now.  I do remember how desperate I was and what a great comfort it was to meet so many different people.  Many of those same wonderful people are on this board as that other AOL board fell apart..l.

I was dx'd with Lupus when I was 19 told I had five years to live at best and then a muscle biopsy returned from Standford Univ. saying I did not have the LE cell sooooo I was told it was "ALL IN MY HEAD" and I was a classic case of pyschosomatic, blah blah blah....   The very cold SOB of pyschiatrist told me I had manifested these symptoms because I was away at a big college and wanted to come home.

HA!   I lived in the smallest little country town very close to where Kat lives and I had worked my butt off in school to  get good enough grades to GET OUT OF THAT PLACE and onward and upward !!! ON with MY LIFE.

I had also been a very good athlete and ran very fast.  I trained five hours a day.  When I went to my big college, the track team happend to see me run and instantly gave me a uniform...  but leg pains began and they came and went and then got really bad and I wound up leaving college with two casts one on each leg and in a wheelchair... thus to be told YES i had LUPUS and then NO I DID NOT.

I have watched drs. scratch their heads and try to figure me and my many symptoms and pain out with little success.   many many many drs...    chkbrd

Suffice it to say that I am 50 yrs. old now.  I've lived a full and rich life.   I married, had two beautiful children (in between battled endometrosis) and having some twenty odd major surgeries, not to mention tests, medical bills and a husband who thought I was just a hypochondriac.  I divorced after 13 yrs. spent eight years as a single mom then remarried the wonderful, sensitve and helpful man I am with today.  Been married 8 yrs. now  :)
 CandleSmilie

FAST FORWARD TO MORE RECENTLY     If you lined up twenty doctors, Ten would say I have MCTD, one would say everything is due to SLEEP APNEA,  there would be arguing in the ranks whether or not I have LUPUS whiich the votes would swing according to the doctors...  I've been told I have FIBRO in the last year or two...  I tried to suggest that possibility when I googled it and yeah... drs. don't like that so much.

BUT  WHAT I HAVE LEARNED....  Having   Raynauds, Sjogrens, RA (which I'm now being told I have Osteoarthritis and not RA), LUPUS, ASTHMA and PE's (I have oxygen at home) I've had bouts of UTIs, kidney stones, undx'd swelling of my belly to the point of looking pregnant and that lasted several years.  I gained weight with no reasonable explaination.  I told them thyroid since I had had a partialthyroidectomy but

IT ONLY TOOK about three years for them to figure it out.  yup, thyroid pills and... voilia
]]]]]]    The weight has been coming off steadioly.

I have more on my list of "problems"   and "complications"  but I can best sum it up (and correct me if I'm wrong Kat or anyone else) that basically... it just means you have an autoimmune issue with several OVERLAPPING SYNDROMES, CONDITIONS or ILLNESSES,.

I want to welcome you and help you understand that the more you can learn, the more you educate and arm yourself with knowledge, the better you will handle all of this.   A positive outlook is essential even though I know depression is common....  but please, come here and talk to us.

Learn from us. and remember... YOU are the consumer... If you don't LIKE  any of your drs.  FIRE them and shoparound until you find someone who listens, cares and really wants to help you.   nurse_

Not everyone has that luxury but i believe it is possible.  And the more you learn how to DEAL with your drs. and the appointment time itself, the better success you will have.   

ALSO, it has been said before, but ask for copies OF ALL YOUR LABS, MRIs XRAYS, test results and keep a folder going for yourself.  It is quite interesting to see how your ANA might be sooo high one month and back down to negative another.   If you journal and piece things together you will feel and be more in control of soooo many things.   

The future has never been brighter for MCTD, Lupus and all autoimmune diseases/disorders.

Well, here's a big WELCOME   Hope I didn't scare you!!!       LOL    I just kinda pour out the thoughts that are in my head...

lots of LOVEand LUCK
Holly :)

Holly,
you about summed it up... Unless we have Professor Kimmy who would like to add some easy laymans terms to this explanation.

Holly I'm so happy to see you on the board. You have been missed. When you feel better tell us more about your Grandbaby and if you have pics to share that would be cool.
Holly (Weasellover) became a Grandmom again last night Grandson #3!!!

Kate, I hope you come sign in and post and give us an update on your health and let us get to know you so we can help you when you have more questions or just need a friend who understands what you are going through.
Kathy  litbflys

Hi to everyone,

     I have MCTD and Sjogrens and have had for about 7 yrs. You guys know the routine, blood work, doctors, doctors, bills, bills, meds for inflammation, meds for depression, and pain meds. I finally quit going to my rheumy, I had been with him for 7yrs and as my symptoms got worse, he looks at me one day and says "I just dont feel like we have a strong enough hold on this". After all those yrs, I thought, If you don't have it by now, you never will. So I dropped him and decided to turn over everything to my family doctor. Since only the symptoms can be treated, why keep running from dr. to dr. and letting the medical bills pile up.

     I do have a question that I need help with, does anyone else, suffer from extreme joint pain, located in my hips, shoulders, knees, fingers, and now the joints in my toes. Here recently I have been having trouble getting out of a chair due to the hip pain, and kneeling is so painful. This has been going on for about 3 months now. The joint pains are bearable during the day, but really increase in the evenings, which I think is really weird. Any explanation for this?   :)

 
Good Morning Spunkie,
Have you taken anti inflammtory pain meds to see if the pain eases up? I ask becaseu if it's inflammed chances are it's arthritis or a form of arthritis.
Joints in the toes!!!!!!!!! I thought I was the only one that gets it. Oh it hurts my big toe joints so bad.
In the past it never helped to go see a Dr. as by the time I get into a Dr. appt. there is no swelling, no joint pain at the exact time my appointment was... Again the Drs made me feel like I was pain pill drug shopping.
All I wanted was relief from all the pains, swellings, the craziness that goes with everything.

You are smart Spunkie to just stay with one Dr who will treat the symptoms. Good thinking on your behalf.
Glad to see you posting!
 CandleSmilie Kathy

I have never posted here. I have been reading posts for a long time, but never been brave enough to share. I have been diagnosed with MCTD for 3yrs. now before that like everyone spent several years with doctors thinking I was crazy. Even as a child I remenber doctors telling my mother I had "emotional sickness".
Anyway I am 36, but this past year I feel like my body has aged 5yrs. I take 400mg plag. and 5mg pred. My doctor keeps trying to reduce my pred. The weird thing for me is even if I go down 1mg the side effects are immediate. 
Does that happen to anyone else? A full blown flare that takes a couple of weeks to recover from.

Hello & Welcome Type A (my old personality & energy level)
I wonder why the Drs would tell your Mom you had emotional sickness. Perhaps becasue some things were going on at the time in your life and it was easier for the Dr. to just lay blame on that issue, instead of really look towards your real physicall symptoms and blood work.
I'm glad to hear you are on Plaquinel and some Prednisone.
My Dr. won't put me on Prednisone unless it's before any surgical procedures. He said due to my age, bone thinning, I'm past menapause and not taking any supplemental pills (I prefer to be au natural, I take enough pills as it is)

Predinsone on everyone is different but when I'd be on say 15 mg. and have to step down to 10 then 5 oh sure you start hurting, you're not wired up cleaning the house, etc.
It's a wonderful drug, but it can be a bad drug too for older women like myself.

Does your Dr have a good reason why he wants you to come off the Prednisone?
If it's not a good enough reason to you, I personally in my opinion would consider changing Drs to stay on the Prednisone as you are still young enough to be on it and be monitored. But everyone is different.

Hang in there, it's nice to meet you Type A, as I swear when I was younger that was my personality  CandleSmilie
Kathy

I think my Dr. is thinking long term and I also don't think I also communicate how bad I feel sometimes. I do know without a doubt I am much better at 5mg. I worry about long term side effects, but currently it is about quality of life. I am a wife and mother of two. Not a very good one if I am constantly sick. I do have one more question. Does anyone else have problems with GERD and what do you do?

Thanks for your post Kathy!

I'm jumping up & down :wave: I DO ! I DO!
Best thing that works for me is called ACIPHEX 20 mg one every morning
Nothing else will work on me.

I do know many other members have GERD and take other prescriptions, but my mind is blank right now on what they take...
As people read they will respond  ;)

Thanks Kathy

     Yes I am on 800 mgs of Ibuprofen every 8 hrs, or at least I am supposed to be. I have been taking it only in the mornings, but this week I've taken it twice a day. It does seem to help. My doctor said I had arthritis but not the deforming type. I know what you mean about going to the dr. and your symptoms mysteriously dissappear. Anyone else on a high dose of ibuprofen? Does it really cause stomach problems etc.  

     I've noticed some of you here are on prednisone, I have never been on it, does it really help? Does it also cause extreme weight gain and "moon face"? I am 41 yrs old and have had a hysterectomy, I do not take hormone replacement. Would taking prednisone hurt me in the long run?  Thanks for all the info. It feels good to talk to someone who has the same symptoms, I guess I'm not as crazy as I thought I was. Ha Ha!!! :grin:

    

Hi Spunkie!
800 mg of Ibuprofen is what I was on till it started tearing my stomach up.Now I am on Darvocet, it's a mild pain reliver with Tylenol.
As with asperin and other anti inflammtory pills you take the risk of many side effects such as ulcers, it thins your blood, etc.
Everyone is different, just try to stay on it as long as you can tolerate it. Because after you have been on it for some time, then to many of us have experianced the "we are drug seeker syndrome" from Doctors who think we have that invisable illness so we are there with weird symptoms that doesn't show up on Xrays...so we must be wanting "drugs".
No we don't want drugs, we just want to feel better!

On prednisone, high doseages and being on it for long term sure it can cause the usual weight gain and roundness (moon face)
When I was on it maybe 3 months the max, I felt wonderful, I had energy, I looked healthy in the face (I'm very tall and too skinny, so a full face was welcomed)
But if you and your Dr. monitor everything you take, you should should be just fine.
It sounds like you have a good relationship with your Dr.
That is so important to your health care.

I'm just curious, has anyone else in your family had any auto immune disorders?
There is a few of us where there seems to be a pattern from our Grandmothers, Mothers Aunts and sister who too have an an auto immune disorder.
My case my oldest sister had Polymyositis in her early 30's.

Glad your'e here with us. We have many posts scattered around to read.
I try to organize threads from each year, so we can use that as a refrence.
You might read some good stories in the 2008 archive threads.
Kathy

                                                       chkbrd LUAW

Hi Everyone,

     Thanks for all the feedback Kathy.  I appreciate the info on the prednisone.  Hey that's kind of funny!  I am also tall and skinny (have been all my life), maybe now I can actually gain a little weight. (ha ha). Besides Iuprofen, I also take Lamictal (anti-depressant) Darvocet and Lyrica.  You asked if anyone else in my family has an auto immune disease, my mother did. She had what the doctors called a "Lupus-Like" syndrome.

     She had Raynauds Syndrome really bad at first, even lost a tip of her finger. She moved to a warmer climate which was a blessing. She, like most others I'm sure, was shuffled from doctor to doctor, spent alot of time on prednisone, which helped her, but always stiffened up her muscles so bad that she could hardly walk. She developed COPD and as the years went on, it was a continuous battle with pneumonia and hospitals. I can't help but think that Lupus was the cause of her death.

     Does anyone believe that hormones or lack thereof may play a role in these autoimmune diseases?  My mother and I both had hysterectomies at an early age with no HRT. It is kinda odd that autoimmune diseases affect women more than men. Does anyone think Lupus or MCTD can be passed from generation to generation? I appreciate all the info.

     
   

 
Holly,
the gabbing girls  gthrng were on the pop up box smilies. I moved it to the board along with a few other ones I had  smileysoapbox jmpbd hidden.

~Enjoy!   CandleSmilie

Hi to all,

    To Songofhearts---I as well as my mother had endometrosis really bad,and both of us had hysterectomies. Do you think at this point taking HRT would make a difference in our lupus or mctd?

     I lost my mother 3 years ago. I know how you feel, such a void in our lives. God bless you! I noticed almost everyone here suffers from some sort of depression. I think living with this disease and the pain that comes with it would depress anyone. This website is such a blessing. It feels good to be able to talk to people that understand these diseases and how it affects our lives. The future is so scary.

     Is it true that the average lifespan of people with these diseases it about 10 yrs???? I am in what they call now the "advanced stages" especially with how my arthritis has reached the agressive stage. Is organ damage next?  Every doctor tells you something different and you get to the point where you don't know what to believe. Thanks for bearing with me, I do tent to ramble.   :grin:

     

Spunkie,
I had endo really bad, required two surgeries the last one was successful. I was working at the time at a Rite Aid, I literally dropped to the floor on my knees in pain. I was having surgery a few days later. The "cob webs" as my OB put it had grown from my uterus over to my overies then attached themselves to the wall of my pelvic floor.
I still have my overaies and uterus.

Perhaps Holly would be best to answer your other questions about life span, but I feel for anyone who has endo.
Hurts like a x!*$#@*

Thank you for the compliment about this web site. I appreciate it  blsh

(((((SPUNKIE)))))))    :coolsmiley:

Didn't anybody warn you that I am the QUEEN of rambling???   LOL   I think many of us ramble because we have "brain fog" or just have so much to say and too few of people who want to listen!!

 gthrng   sooooo, you are definitely in the right place!

I'm sorry it has taken me so long to reply....  I really have been mostly stuck in bed and just riding out the storm of depression while the meds all kick in.      jmpbd  and yes, they ARE wOrking... it just takes time.  I'm lucky because for many people it takes FOREVER to find the right antideprssants that truly work for them correctly.

ANYWAY, I wanted to address a few of your fears.   The first piece of advice I would give you is to NOT STRESS nor PROJECT what MIGHT happen.  I am proof of that.

Like I have said before, when I was 19 they told me I had absolutely only five years to live.   Hmmm I am now 50 and still going, yes, strong....   I have OVERCOME, LEARNED FROM AND SURVIVED MORE THINGS than most people ever could even think of!!!!     And so have most the other people on this board.

It is always amazing and miraculous to me how we seem to beat the odds on so many things.  I don't have a crystal ball, but I DO KNOW THIS...  a happy, positive attitude will extend your lifespan considerably.
 :2funny:  Love, laugh and learn.   Very few drs are going to get anything about you right, so go with the flow and don't BE AFRAID.  I know that's a hard one.  I've had plenty of scary, heart pounding, life threatening experiences, but I've walked away fairly unscathed from all of them.  Time and time again, it seems we all beat the odds.... and things are looking brigter for us all on so many levels. 

I believe in your lifetime they will find some amazing answers about this whole autoimmune ball of waxx.    I bet thru things like stem cell research and other cutting edge studies that we all have amazing hope!

LIVE EACH DAY with gratitude and happiness.  Serve others....   Look outside yourself and realize what amazing GIFTS you have to share with and give to others....  that is where you will find the most joy.

I always loved the quote, "A man all wrapped up in himself is indeed a small package."

Now, that's really easy for me to be all chipper and upbeat TODAY when just three weeks ago I was in a very dark hole that was hard to climb out of.  Depression.  Just like each new left hook, right jab and unexpected punch we all experience in the "ring", fighting our way out, we take on each problem as it comes up the best we can.  Depression was a totally new one to me, even though I know that so many others suffer from it, esp. those who have chronic pain and illness....   but I just never really got HIT with that one until this past year... I intellectually knew all about the difference between clinical depression and just "depression" that we all battle with ups and downs..... No this was WAYYYY different and definitely life changing for me.

But you see, for all the pain, suffering and difficulty that this new experience offered me, it also gave me strength, WISDOM and heartfelt INSIGHT that I tried my best to understand and be understanding OF... but it is NOT the same as truly experiencing it.

So, my dear sweet Spunkie.... with a name like that.... it tells me you got a lot of fight, moxy and SPUNK IN YOU...we are ALL here for you.... gthrng  continue asking, learning and growing not only from your own experiences, but take counsel and understanding from those who are all here on this board.  It is always such a comfort to hook up with people here who have experienced EXACTLY what you are going thru.... and if not, then YOU are paving the way for the NEXT one who is yet to come....  and we will all learn something from whatever you share.   and WE ALL WILL BE STRONGER FOR IT.... BETTER FOR KNOWING YOU AND MORE EDUCATED BY "takiing the journey" with YOU.

*sigh*   see whose rambling now!!!!   LOL    Please write again.   It is so nice to get to know you and to hear what you are going thru.   Again, take comfort in knowing that most of us live to a ripe old age, despite AchLL that we have gone thru.   We have lived, laughed, held down full time jobs, raised familes, or dogs or ferrets or birds... we are as diverse as the many symptoms and challenges of this disease....

Take heart.... know that you are loved and cherished...

Always,
Holly :)         litbflys

Hi Kate
My name is Kris and I was diagnosed in 2005 with mixed connective tissue disease also.  In 2002, I went to a rheumatologist and for the first 2 years I was treated for just lupus but the doctors didn't really know what was wrong with me until I found a truly amazing rheumatologist.  I also suffer from the Raynaud's which is what really started this whole thing and then one thing seemed to lead to another.  Fortunately I was able to have one more child thru all of this it was tough and honestly they told me to abort but I wouldn't and she was born premature BUT is she now 4 and thriving.
This disease is tough, however, I believe that with a good support system around you it does become bearable.  The problem sometimes is that you "look" fine so people don't understand.  I have the RA in my hands that have severly disformed my fingers but I have learned, although is seems unfair, to just be positive and cope with it.  Even when people are just ignorant and stare.
I wish I had known what I was up against from the beginning but the doctors were baffled.  Please please don't let this get you down.  I went throught the angry depressed stage and it just makes you feel worse (as if that is possible, right?)  Try to look at the good things no matter how hard or far away it seems.
I would love to compare stories with you.  I just found this web-site it is great to know that there are people like me, it felt I was so alone because no one has even heard of this illness.
Feel free to contact me 

Hello to All,
     First of all I want to say I am so thankful for this site. I have spent the last 5 months in doctors offices trying to figure out what was wrong with me. Back in September I started noticing I was feeling more tired that I usually do. I have a very stressful job working for a Breast Surgeon in a very high cancer practice, so I just assumed that it was stress. Then I started noticing that more and more hair would come out in the shower or while brushing. Stress can cause that, too, so I just passed it off. Finally, after getting to the point where I was coming home from work and falling asleep on the couch right away I decided to see my doctor, thinking maybe I should get my thyroid checked.
     After seeing my PCP, all of my tests came back normal, with the exception of being anemic. I started taking iron supplements but after a month of absolutely no relief I went back. Thankfully I had a very smart doctor because her next question was whether or not I had anyone in my family with Lupus or any other autoimmune diseases. MS and RA are both in my family so she ran an ANA, ESR and CRP. My ANA came back positive, 1:160 with a speckled pattern, so she referred me to a rheumy. My first visit with him was back in December and I have just now (mid March) gotten the final diagnosis of MCTD. I was so sure I had Lupus! I have severe joint pain, and have had it for as long as I can remember. I also have a malar rash, hair loss and extreme fatigue, especially during a flare up. I have joints that randomly swell to 2-3 times their normal size. I have learned so much through this website and I thank everyone for being to candid with the advice. As I am just learning about MCTD, I am finding it hard to cope and find a balance in my daily life. I look forward to getting to know everyone hearing any advice as to how you deal with your MCTD.
Best,
Ashley

Hello Ashley and thank you for the website compliment!
I am so sorry to hear you are diagnosed but I am happy you didn't have to go through years of  misdiagnosis.
Your Drs sound like they are on top of everything.  :smitten:
Have they made a plan for pain relief for you? The joint pain sucks big time! I hope your Drs get that under control. For our hair there is nothing they can do to make it stop from falling out.
The fatigue is something else if you get bad enough to where you can not work you might want to consider filing for SSDI (Social Security Disabilty).
Try to get your iron levels brought back up to theraputic levels, that helps me from not being too sleepy. When I'm anemic I am very tired and cold.(I can't get warm)
Please join us often as you can.
Keep us posted on up coming Dr visits.
Glad you are here!
Kathy CandleSmilie

Hi Kathy,
     Thank you for the warm welcome! My Rheumy has currently started me on Celebrex and Plaquenil. I have noticed such an amazing difference on the Celebrex. The Plaquenil I was told can take several months before I could start to notice any difference. I feel like I am getting a more restful sleep while on the Celebrex because the pain doesn't keep me up. I still don't feel 100%, but there is a definite improvement. The other thing I had noticed is I feel like I have more mental clarity. I don't know if that's because I am feeling more rested or if its the meds. My iron levels are currently up to normal, but I do notice my hands and feet are always cold (Raynauds). I think I am in the midst of a flare right now, though. I had a couple of weeks where I was feeling really good and now I'm asleep on the couch as soon as I get home. I'm so tired I don't want to cook or eat, so I've been losing weight like crazy (15 lbs in the last couple of months). I also feel like the Plaquenil takes my appetite away. Any advice on how to deal with this? Has anyone else had a similar experience? Also, on top of working full time I also go to school. Last night I got home from work and passed out on the couch and missed class. I am on scholarships, so it is essential for me to keep my grades up, which I'm finding hard to do when I have no energy.

Hi!
I have never been on Plaquenil. I wish I could give you my testamony to what it does but I can. Others are on it, I'm sure they will post.

You probably are feeling better due to the Celebrex. I have sample packages I have yet to try. I forgot all about having them. My Dr put it in a brown paper bag LOL and I put the bag away and forgot all about it! So I am tempted to go get them out and take one and see how I can tolerate it on my stomach.
The last med I took was like Celebrex it really did a number on my stomach. I had to take another pill (Aciphex) for those side effects.

I can relate with weight loss as I have been having a problem with it. Seems the more I eat the more weight I lose or my muscles lose their firmness. I used to wear a size 6+ now I'm down to a one. Not cool being five feet 7 inches tall.

Please try to rest as much as you can on weekends or days off. Yes school is important with the scholarships. GOOD LUCK with your classes! ;)
Kathy

I'm so sorry to hear your other med upset your stomach so badly. I know for me, at least, I got relief from Celebrex the first day that I took it, so I would definitely say it is worth a try. Although I also seem to have a stomach of steel (must be from the years of coffee drinking) so nothing really upsets it. Thank you for your words of encouragement, I will certainly try to rest up as much as I can. I treated myself to a massage today and already feel a little better. I hope you will also find time to rest and relax over the weekend. Thank you again for such a warm welcome, it is nice to commiserate with others who know what I am going through.

Hello Ashley,
I have been on plaquenil for a year now. It does take a few months to notice a difference. That was the hard part for me. I have also lost alot of weight, but I don't think mine was due to the plaquenil. I can relate to Kathy when she commented on muscle mass. I feel like I am losing it all. I do walk on good days, and I think that is helping.
Glad you were able to get a massage. It is important to be good to yourself when you can. Just remember to listen to your body and rest when you need to.
Tammy

Hi Tammy,
     Thank you for the input on the Plaquenil. Patience was not a virtue I was blessed with, so I think the waiting is the worst part. Thankfully the Celebrex has given me relief in the meantime. I'm so sorry to hear you and Kathy are having such a hard time with losing muscle mass. Thank you so much for the advice- I look forward to getting to know all of you and hopefully I can be as much help to all of you as you all have been to me!

Hi Ashley!
A massage sounds so good!!
I have never had one by a professional, just the hubby. I need a real deep massage as I get knots in my muscles. From my neck, back and arm
It hurts but feels good to get them rubbed out.
Massages are suppose to help improve blood flow and that is what I have serious problems with Periphial Artery Disease. (PAD)

Tonight I am soaking in a long hot bath, and using some goodies one of our members sent me in the mail today. A bunch of herbal goodies to try, some nice socks good for my circulation, some soft music, some extract oil and I'll be good to go this weekend ;) (considering I don't overdo it)

Have a great weekend Ashley!!!
Kathy

Wow, it sounds like  you're really going to pamper yourself! There really is nothing like a nice, hot bath. I hope you enjoy your soak and your weekend  :)

 :wave: gthrng gthrng gthrngHEY GIRLS JUST SOAK FOR ME AS WELL
LOL STAY BLESSED AND ENJOY YOUR NITE  :angel:   

 chkbrd Tammy and Ashley,

We are so glad that you found us and are posting! Many people will read this thread and get a lot of information that will help them.  :)

Last night I had wrote a response to all you ladies and my modem froze up  smileysoapbox  and I was done for the night!

I will attempt my post again!

Most people who first start on plaquenil have some stomach upset. I had diarrhea for a few weeks. It started working within a few months. My nasal and oral ulcers responded pretty fast. -> I have scarring in my nose from those rotten things. It cleared up my rash pretty well too. However, I am still sun and fluorescent light sensitive.

As for the arthritis pain, I needed methotrexate in combo with the plaquenil to really cool things down. Many patients require 2 or 3 DMARD's to effectively cool things down. Your doc is the best one to monitor you and play with meds combo's until they find the right cocktail for you. Many of us need combo therapies, and some don't.

Be patient,and try to give the meds a chance, but if you are not feeling well and still have active disease discuss it with your doctor so that he/she can make adjustments with your meds.

Hair loss can be the disease or the meds that treat the disease. My hair is diffusely thin, I'm contemplating cutting it off.
Cool thread ladies!

Better days ahead and Gentle Hugs,
Kim

Hi Kim!
     I just recently cut off ALL of my long locks. I contemplated doing it for months before I finally caved. I get SO many compliments on it, it makes me wonder why I waited so long. Although, it was a VERY emotional process for me. It was definitely from the disease, as it was one of the first things I noticed when I wasn't feeling "right". I thought it was my thyroid, but got the huge shock of MCTD/Lupus. I certainly wasn't expecting that. My once thick hair continued to thin out to almost nothing, though it seems to be growing in fuller now. I say go for it, for me it was definitely time for a change and I don't think I ever would have done it on my own.

Hello all! I am new...I was diagnosed with autoimmune disease about a week ago.
I am not really taking it well.. :cry:, I have MCTD which I have no idea what exactly it is? Is it Lupus?
Is it something else. I am really scared! Will I still be able to have children? I am 30 years old but I wanted to start having kids soon. I really would like to do this the most natural way possible, I really do not want to take steroids.
What are my options? and what other doctors should I see ?

Thanks :)[/b][/color]

Hello Mzlatisha nice to meet you!
I'm sorry MCTD brought us together but I will help you the best I can.

Your Primary Dr or whoevver diagnosed you last week should be sending you to a Rhuematologist. Did they mention that they want you to see one?

Most of us are not on steroids for everyday living.

As for pregnancy most of us had good pregnancies as long as you are monitored which most OB/GYN do anyways. Prenatal vitamins and blood draws to watch your levels is really all they do, unless you are having preclampsia or other health issues arise..
Hang in there
Keep us posted.
Kathy

---

What is Mixed Connective Tissue Disease (MCTD)?

A few decades ago, scientists discovered that patients with a connective tissue disease had symptoms of both lupus, scleroderma, myositis, etc. These diseases are called ‘overlap-syndromes’.

 In 1969 Sharp and his co-workers found out that there is one specific type of overlap-syndrome with symptoms of lupus, scleroderma, myositis and rheumatoid arthritis, together with a large quantity of antibodies against one specific antigen, namely U1RNP. They believed it to be a distinct disease entity and called it MCTD. Meanwhile, it is known that Sjogren’s Syndrome is very common in MCTD.

It is still a matter of debate whether or not this disorder is diverse from the other overlap-syndromes. In general, however, this disorder is considered a distinct clinical entity.
 
Most important symptoms

*Raynaud’s phenomenon
Is basically always present in the early phase of the disease, mostly without other symptoms at the level of the fingers, unless scleroderma is also present at the onset of the disease.

*Swollen fingers
Mostly all the fingers are swollen in the overall length and become ‘sausage-like’. Sometimes this is only temporary, but occasionally it evolves into sclerodactyly (thin fingers with hard skin and limited mobility).

*Arthritis
In the early phase there is painful swelling of the joints of the hands and feet like in rheumatoid arthritis. Damage to the cartilage or bone, however, is rare. As such, malformations do not occur or only seldom and the function of the joints remains intact. This kind of arthritis is comparable to the arthritis seen in lupus.

*Muscle inflammation
In 10 to 20% of the cases, patients develop a real form of myositis, muscle inflammation (see polymyositis). Two out of three patients suffer from significant muscle pain (no weakening or paralysis), without demonstrable abnormalities in the laboratory test, electromyography or biopsy. Patients complain mostly of pain at the level of the large muscle groups of the shoulder girdle and the upper arms.

*Lungs
The lungs may show the same abnormalities and problems as in scleroderma. Reduced lung volume is common, sometimes reduced absorption of oxygen and rarely overpressure in the lung vessels with fatal outcome occurs.

*Oesophagus
The same complaints as in scleroderma may occur.

*Heart
Inflammation of the heart sac or pericardium (pericarditis) may be acute. Unlike in polymyositis, inflammation of the heart muscle (myocarditis), which may cause heart failure or arrhythmia, occurs rarely. These complications are very serious and may be life threatening.

*Neurological damage
Meningitis, psychological abnormalities due to brain damage, damage to the spinal marrow or facial nerves have been described. These symptoms occur often in Sjogren’s Syndrome, which often occurs in MCTD.

*Renal involvement
Renal involvement is very rare and can be similar to the damage caused in scleroderma (especially damage to the renal blood vessels) as well as to the damage caused in lupus lupus (damage to the renal filtering units).

*Skin and mucous membranes
The skin may show symptoms of scleroderma as well as of lupus. The mucous membranes (mouth, vagina) and the eyes may be dry due to the Sjogren’s Syndrome .
 
Who can get MCTD and is it hereditary?
MCTD is a rare disease. In most cases the age of onset lies between 20 and 50 and 8 to 9 out of 10 patients are female. MCTD is not hereditary. There can be a difference in the disease’s genetic susceptibility: the same susceptibility often seen in lupus, rheumatoid arthritis or Sjogren’s Syndrome, can occur in combination.

External factors may also play a role. Some cases of MCTD have been described after the patients had worked professionally with PVC (polyvinylchloride).
 
Evolution
Since MCTD overlaps (‘mixes’) different connective tissue disorders, there are many different types, and consequently, many prognoses. Complaints and symptoms depend on the organs involved, the degree of inflammation and the general degree of disease activity. In general the prognosis is favourable if the disease is adequately treated. Life expectancy is comparable to the life expectancy in lupus, i.e. favourable with a few exceptions.
 
Diagnosis
The diagnosis is based on complaints, symptoms and organ involvement and on the presence of anti-U1RNP antibodies in high titre (concentration). It is the only connective tissue disease for which one specific type of antibody is necessary to make a diagnosis (at least in most centres). If the doctor suspects the diagnosis of MCTD, some additional tests like lung function tests, heart check-up, examination of the kidneys and blood pressure need to be carried out. In case of muscle complaints or nerve pains an electromyography is necessary. The results of these examinations may also contribute to a diagnosis.
 
Treatment
Although treatments with a low dose of corticosteroids have been successful, there is no standard procedure for MCTD. The treatment is based on the type and degree of organ involvement, and can be a treatment for lupus or for scleroderma. The treatment has to be individualised for each patient.
 
MCTD and pregnancy
Surveys on the subject are quite different. The influence of pregnancy on MCTD or vice versa can be compared to pregnancy in lupus.
 
Overlapping syndromes
Besides MCTD there exist also other overlap syndromes which are less clearly definable or which do not have anti-U1RNP antibodies. As in MCTD, treatment is based on the type and degree of organ involvement and it is individualised for each patient. The evolution and prognosis are also comparable to MCTD, except that there may be more individual dissimilarities among patients.
 
Undefined Connective Tissue Disease (UCTD)
In the early phase of a connective tissue disease and especially at the onset of an overlap syndrome or MCTD, the symptoms can be very limited and unusual. Although the onset of a connective tissue disease can be certain in such cases, it is impossible to define the type of disease with certainty. That is why the term UCTD (= undefined connective tissue disease) is used.

Mostly Raynaud’s phenomenon, joint pains, sometimes arthritis and muscle pains are present. The evolution is very diverse: some patients remain in this phase while others evolve quickly into a real form of lupus or another type of connective tissue disease. Again, treatment has to be individualised according to each patient.

---

 :) Thanks so much....

My regular doctor sent me to a Rheumatologist and she diagnosed me with MCTD.
I had more blood work and xrays to determine this.
I will see her again in two weeks to see what treatment.
I have been taking Flaxseed oil, Vitamin A,D and E, MSM, Fish Oil Omega 3, Garlic..
Have been making me feel ALOT better.
and I have been listening to my body and sleeping more.

Thanks Ladies...

 ;)

Yes listen to what your body is saying and tune into it... if you are tired sleep.
Easier said than done sometimes.
Hang in there
Kathy

I went back to the doctor today and she prescribed me Plaquenil.   I read that it is going to take a while to actually work.  But I am sure that I will be fine.  I am soo tired though...and I cannot sleep most nights.

Hello Everyone,
My name is Tara I am 36 yrs old and I have MCTD, Secondary Raynaud's Phenomenon, and Osteoarthritis. I was first diagnosed with MCTD in 1992 when I was 19. I actually thought my DR. was making it up it did not sound like a real condition. I was so young I did not know to ask questions so I just called it arthritis and delt with it. I started on Plaquenil by age 20 and then by the time I was 23 I became ineligible for mom and dads insurance and stopped seeing my Rheumy which of course  then I was no longer taking plaquenil but was continuing with the OTC motrin as needed for pain.

In 2004 I had my daughter and wow the pain was getting worse but still being the "tough one" that I am I stuck it out. In 2008 I finally sought out a new Rheumy and he ran all the tests again and of course I was diagnosed with MCTD but he also added the Raynaud's and OA. So here I am given these big names of conditions I suffer from but my Dr. made no effort to explain the disease to me nor did he offer any kind of information on the disease or any support groups out there. Through my own research I am learning about MCTD OA and Raynaud's, I was so happy to find this site, I am not crazy, lazy or a hypochondriac! (Thank you Kathy).

I am in moderate to strong pain daily, the OA is mostly in my neck, middle back, wrists and fingers. The MCTD as you all know is everywhere....
So I am trying to keep up a normal life I hardly ever let on to hubby how much pain I am really in (hubby is very supportive of my pain and need for rest). But, I don't want to appear lazy or incapable of doing all the tasks required of a stay at home mom. (I was a director of a private school for 7 yrs and a teacher for 13 yrs, but in Dec 2008 the stress from the job was making me so sick I decided to become a stay at home mom for now.)
For exercise I work out at the gym a couple of days/week when I can and in January I began running 3-4 days/week , I am hoping that through regular exercise I can keep my energy and fitness levels up. It is hard, sometimes I just walk and sometimes I have to stay in bed.

I only take 800mg motrin as needed usually 1 to 2 /day, Dr. did not suggest anything else. I don't want to take meds if I do not have to, Does anyone know if am I putting myself at risk for future joint damage by not taking anything?

Because I never say this out loud may I please vent about my pain???? :cry:
I am tired all of the time....My joints hurt all over...I get depressed sometimes...I wish I had more energy for my daughter...I want to run farther....I want to use my hands longer for gardening, flute playing, folding laundry etc....
Ok that is all blsh
I am looking forward to getting to know everyone here
P.S. If anyone can recommend a dr in my neck of the woods I would greatly appreciate it.
I live in Fair Oaks,Ca (suburb of Sacramento)
Thanks again for letting me talk about my condition.
~Tara~

Hello Tara & Welcome!
You live near Kim (3sisters) and I am south of you in Modesto.

I sure can relate to the 800 mg of Motrin. Tara that was all I ever had prescribed to me from my 20's through early 40's. I mean I had to stop taking it every now and then as it was eating up my stomach as I had to increase how many I was taking. Once I changed Drs and was put on a mild pain med called Darvocet (it has Tyelenol in it) then I eased up on the Motrin. Only when my joints are so bad I can hardly move then I'll take the Motrin as long as my stomach can tolerate it.

I bet you have every wrist gaurd, back brace, foam knee *thing*, you name it for every pace there is inflammation.
I can't live without my wrist gaurds, ever since I was in my early 20's (I'm now 50)
Only lately my knees act up bad, like yesterday. My husband had lost me in Target. I seen him way up ahead, but from walking around in the garden deppt. girls clothing, and cleaning products, it hit me hard & fast my knees were sending pain signals I never felt before.
Finally he turned around by the front doors and saw me slowly coming behind him he's saying "why didn't you yell out you are behind me so I would quit looking for you?"
Well see there is several people in front of me and it wasn't Wal Mart and I tried to be respectful and NOT yell in the store.
I just wanted out of there.
I knew I should of took something for pain before we left and I didn't
THat is a price to pay if there is going to be a lot of walking, bending, stooping, lifting, etc... you know the feeling.

Just make sure while on Motrin you do take it with food and not on an empty stomach. You'll end up with one more health issue called an ulcer or GERD.
Chaulk that up to the list.

You are so lucky to have a wonderful understanding hubby. If you need to rest he will understand. Try to nap if you are going through the "I need to lay down and close my eyes" period. Just react to the way your body is telling you what you need to do.

Yesterday was a very active & good day for me working outside removing old trees and plants and then planting new tomatoes, peppers, jalopenos, onions, etc. But I am paying the price today in my neck and lower back. I have that Spondylithisis <sp> in my lower spine and bi-laterial herniated disks in my neck.
So please rest as your little one is playing or is with Daddy shopping etc.
I used to be a OTC nest freak and about 6 years ago I said it's not worth knocking myself out to have that perfectly cleaned home.

I only do laundry now as needed not everyday small loads to keep laundry always done up. I no longer go around cleaning cob webs daily. Only as needed
I mop and sweep every other day or as needed. I dust once a week not once a day. I was very anal about appearance. Not anymore. It will knock you out.

I'm glad you are here Tara, please come here anytime, vent as you need too!
WELCOME!
Kathy

Hello Tara-

My name is Steve, I am 38 yrs old and was diagnosed a little more than a yr ago with MCDT/Raynauds/etc.
I can relate with everything you said in your post!  My wife and I have 3 kids (from 13 to 8) and I understand your want for more energy and less pain!  I think it's great that you have alot of support and understanding from the loved ones around you.  As well, your running is fantastic!  Keep it up, and when you can increase your mileage!
That was the orders I had gotten from my Dr. back in April.  Like you, I began running in Feb. and have been able to stop taking Plaquenil, and have reduced my Prednisone from 10mg daily to 2.5.  I also take Omega Fish Oil 3x daily as well as a Multi-Vitimin 1x a day (when I remember to).  All of which may actually do nothing for me, but I feel better when I take them.

I am a little sad though, that you are in constant pain, I think there are other avenues for you to investigate, because while you may never be "pain free" there are othere meds and treatments available to better manage that part of the disease.  (Acupuncture, massage, holistic medicine, as well as DMSO [a topical gel/ointment].  And when you have less pain you may have more energy?  (I have used DMSO by mixing it with Aloe Vera Clear Gel, you can get almost anywhere.  Google DMSO and let me know what you think.  It does help with pain and swelling in joints.  But be careful because if you apply too much it gives you a headache... as I found out the hard way! 

As far as putting yourself at risk for future damage to your joints by not taking anything stronger than Motrin, I can not answer that.  Like you most people here are in some sort of constant pain and how much you can tolerate will differ from others.  I have always opted to not take anything or the smallest dose possible to manage the symptoms as long as I can function somewhat "Normally".  And that maybe what most people do...

Once again, welcome.  This is a great place to get info. chat or just use as a sounding board.  Hope you have a great week!

Steve