Newbie with MCTD

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Heartsong
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 2/7/2008 7:49 AM (GMT -7)   
Hi, everyone!
I just joined yesterday and look forward to getting to know all of you.  I was diagnosed with Mixed Connective Tissue Disease three weeks ago.  I first noticed several lumps on my neck in Sept, didn't think anything about it.  In Nov I asked my husband "Feel my neck.  Can you feel those bumps there?"  He said, "Feel them? I can see them! You need to get that checked out."  I went to my PCP, who immediately turned grim, ordered bloodwork, told me I needed an excisional lymph node biopsy ASAP.  I was shocked!  He was so serious.  Told me he suspected Hodgkin's disease.  I was to see a surgeon the very next day.  The surgeon wanted to do the surgery the next day! but it was Thanksgiving so I had to wait until Monday.  All the doctors' urgency scared me to death.
 
The lymph node labs came back as "dermatopathic lymphadenopathy."  Since I had no skin problems, they didn't know what to do.  Eventually symptoms began to present that helped me finally get a diagnosis.  My arms and legs hurt.  I couldn't lift my arms past my shoulders.  I had terrible pain every morning.  My joints starting aching.  My energy level was almost to 0.  I had difficulty swallowing.  I developed a limp.  My PCP did more bloodwork.  He found my sed rate to be 65 and my ANA antibody level was 1:1280!!!  I was sent to a rheumatologist who looked at my lab work, examined me, and said I have MCTD.  He put me on 15 mg of prednisone, 400 mg of Plaquenil, and a calcium/D supplement.  He also insisted I get a flu shot before leaving his office that day.  Even though I was very scared about the prednisone, I was so relieved to finally know what I have.  Now I can deal with it.  Since Thanksgiving, everyone around me, including doctors, have been expecting lymphoma. 
 
The rheumatologist warned me about the prednisone weight gain and the moon face.  I felt vain caring about it so much, but I did.  He put me on a special diet like I'm sure many of you follow.  High protein, low carb, and no processed sugar.  The only sweet thing I can have is fresh fruit and only two servings of that each day.  It's been weird, but I've lost 7 lbs in 2 weeks.  My next appt is Feb 14.  I have no idea what his reaction will be.  Evidently I must have consumed a lot of sugar in my former life. :)
 
Sorry this is so long...thank you so much if you've read this far.
 
Heartsong
 
DX:  Mixed Connective Tissue Disease (lupus, RA, polymyocitis, scleroderma) Jan 08
Meds:  Prednisone 15 mg, Plaquenil 400 mg, Wellbutrin XL 300 mg, Calcium/D 1200 mg,
Darvocet as needed for pain ( I take it maybe 3x/week) 

kncb95
Regular Member


Date Joined Jun 2007
Total Posts : 40
   Posted 2/7/2008 8:23 AM (GMT -7)   
Welcome Heartsong! I also have MCTD this is a great place to be. I have been given lots of advice from the wonderful people here. Due to the fact that autoimmune diseases are so frustrating to patient and somtimes their doctors. The people here have kept me encouraged when my doctors are difficult or don't listen.
about being vain because of the prednisone I am sure most of us had those thoughts. I know I did.
Good Luck with your treatment keep us updated!
Dx: Mixed connective tissue disease '05, sjogren's '05, GERD '05, insulin resistance '01, ADD '01, major depression '98, polycystic ovarian syndrome '97 Hypoglycemia '07 hypothyroid '07

adderall, prozac, synthyroid, multivitamin


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/7/2008 9:02 AM (GMT -7)   
Hello Heartsong,
 
Welcome to the forum. You gave us a great discription of your symptoms and what you've been dealing with. That helps us to help you!
 
with that 15mg of prednisone you've been given, you might not get the moon face and major weight gain!!  Those come with higher doses of prednisone, like 20mg and higher.  Wouldn't that be great if you could bypass all that added strain and stress!  I hope the dose works perfectly for you.  The plaqunil will take a couple of months to kick in.  Just so you know.
 
I need to change my diet too. I have too many carbs in it and my weight loss program has stalled out!  So I'm going high protein too! 
 
I'm looking forward to getting to know you!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 2/7/2008 5:04 PM (GMT -7)   
WOW. Heartsong... you have been through it.... Welcome to the board.. I haven't heard of MCTD... All the best to you.....

lucylynn
New Member


Date Joined Feb 2008
Total Posts : 6
   Posted 2/7/2008 5:35 PM (GMT -7)   
Hi Heartsong,  I am also a new member and I will tell you that this a great place to be! You will get a lot of information, warm wishes, and encouragement.  Welcome from one newcomer to another!  I need to make changes to my diet also.  I take plaquenil and it does take a while to kick in.  I have been on it since sept 07.  Hope all goes well for you. Hang in there and keep us posted.  Love and Light,  Lucylynn
 
 SLE april 07, migraines, vasculitis , fibromyalgia     Plaquenil,  metoprolol,  evista, prevacid, diuretic, ambien, lotrel, Zanaflex, 500mg calcium plus vit D 2xs a day


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/7/2008 7:07 PM (GMT -7)   
Hi Heartsong, welcome! Wow... you have been through a lot! I am glad you were dx fairly quickly, it sounds like you have some good doctors that were really on top of things.

Congrats on the weight loss, that is great! It always helps to eat a good diet and maintain a healthy weight. I am not on pred (rheumy said it wouldn't be a long term option, instead she put me on Imuran with a mix of other meds) but I sure have a HUGE sweet tooth tongue , I am really trying to control it though. I cut out my soda during the day while I'm at work and replaced it with water and lost 4 lbs.

Plaquenil is a great med for lupus, it helps a lot with my joint pain and even more with fatigue. After I started taking it I noticed it helped my fatigue right away. It wasn't until my rheumy wanted to take me off of it did I realize how much it helped with my joint pain too. I went off it for about 3 weeks.... won't be doing that again nono .

Anyway, welcome to the group! Feel free to ask any more questions you may have. Take care
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/7/2008 10:04 PM (GMT -7)   
I also wanted to welcome you to the forum. I'm sorry to hear about everything you have been through and I hope the meds are helping with your symptoms. Congratulations on being able to follow your healthy diet - it's not easy to try to avoid sugar and carbs while on prednisone.. I've gained a huge amount of weight since starting prednisone and hate how I look.

As you can see, we have a great group of supportive people who will be there for you through all the ups and downs of this disease.

Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 2/8/2008 2:12 PM (GMT -7)   
Welcome to the forum Heartsong!!

There are some good links in my signature with some great info.

Feel free to ask questions as they come up. Glad you found us!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 2/9/2008 11:03 PM (GMT -7)   
Greetings Heartsong!

Welcome! As you may have noticed, there are so many great people here who will be able to answer your qyestions and give support when you need it. I hope you can stop by often to visit and learn with us. Lucylynn and some of the others mentioned that it takes awhile for the plaquenil to be fully effective. For me it was 6-8 months, catually, but it really helped me get on the road to recovery. For me, however, the plaquenil was not quite enough so my rheumy has me on additional DMARD's for added "ammo" - so to speak. I was on methotrexate for awhile and have now been switched to Arava but I still take the plaquenil.

It sounds like you are off to a good start. All my best to you in your success with your healthy diet. You are smart to not let the weight gain take hold of you while trying to fight this disease. I have certainly gained weight but it is not as bad as I thought it would be. I hate how I look, though, so I am working hard to eat better. Don't ever worry about being vain about the way the pred could make you look. There is nothing wrong with you - you are just being a normal human being!

My prayers are with you!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


julesandsherman
New Member


Date Joined Apr 2008
Total Posts : 2
   Posted 4/24/2008 8:18 PM (GMT -7)   
Heartsong -
How lucky for you that you were diagnosed so quickly! I went through so many unnecessary (not to mention some embarrassing) tests in the few months it took for diagnosis. Sounds like you are doing well, though. I was diagnosed with lupus in 2002, but they changed the diagnosis in 2005 to MCTD. My boyfriend when I was diagnosed didn't like dealing with it or hearing it, but he gave me great advice that really stuck - you can choose to live with it and be miserable, or you can choose to live with it like you did before. I never let it stop me! Make sure you eat right and keep yourself healthy otherwise (if you're overweight, now's the time to lose it - it will only help you with the aches and pains). I sleep a lot - 8 hrs., at least, every night, but I feel good for the most part! I work full time and am in college for a 2nd degree (nursing), so I'm super busy. I think that's where the sleep comes into play. I've felt better in the past year and a half since I started school and bought a house, because I take better care of myself now than I did before. Often, I forget I'm not "normal", except all the pills I have to take. I'm convinced the eating right and taking care of yourself is of utmost importance. I have friends with lupus who let it run their lives, are overweight, and eat terribly - they're always sick.
I've refused the prednisone (only used it when I threw my back out lifting my dog into the car)... my old Dr. used to try to push it on me, but the new Dr. is amazed how little I need pain meds. I take Relafen for NSAID, Plaquenil, and a calcium channel blocker for Raynaud's, occasionally Vicodin for pain.
Keep a good attitude, too! I laugh when I pop and crack at 30 years old, sounding like an 80 year old. My biggest problem really is my Raynaud's, and I do have to admit that's my one thing I let people know about - I had to get a prescription to wear long sleeve shirts under my uniform for school (silly dress codes) and one for a space heater in my office (they're against company policy). I actually hate telling people the full extent of things, because then they start treating me like I'm fragile.
Good luck to you!

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/24/2008 10:21 PM (GMT -7)   
Hi Jules!! Welcome to the forum! Glad you found us. If you have any questions, you might want to start a new topic. The other members may not see your post in this one.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/24/2008 11:41 PM (GMT -7)   

Welcome. I will say something I am not sure anyone else did- moon face depends on the person. I get it at 5mg. Actually I gain 10lbs the first week I am on 5mg of prednisone. But I have been an abnormal case all along. I will never live like I did before I became ill. Of course I can't recall what I lived like since I was so young. What I can do is do things that make me happy and give me a chance to be part of the world. I am in grad school and doing well. I may not take many in person classes, but I manage. I am having a baby any day now, some people thought it would not be possible. I may not work, but I do things that help people whenever I can. I have the hope of working someday, but have accepted I am not likely to ever be able to handle a full-time job. You figure out what you can do without making yourself worse and you run with it. You sleep more, rest when you need to, and follow your doctor's orders. We all do the best we can. I may be miserable some days, but I am alive. That is more than I can say for a couple of my family members. So long as I do what my doctor recommends I have a chance to have a normal life span and will be able to enjoy almost anything I want to do. You cannot go on as if you are not ill, but there are so many ways to adapt.

I want to give you hope and encouragement rather than telling you the bad. A few people around me try to remove all my hope and if I listened to them I would give up. (Family members) This place is wonderful because someone on here will understand what you are going through and we all will offer support and a place to vent when it gets to be too much. Never let someone tell you that you can't do this or you can't do that unless they are saying that because doing it would endanger your life or health and they are an expert with enough knowledge to KNOW what they are talking about. I had many tell me I couldn't do college but in 3 1/2 years I had a bachelors with high honors and had been accepted at EVERY SINGLE grad program I applied to. People tried to tell me I couldn't possibly have a baby safely, yet after careful research into the issue and doctors I am 35 weeks and the biggest problem is water retention and high blood pressure- problems perfectly healthy women have. My baby is doing fine. The people saying these things were not experts, they were people who had not a clue what they were talking about but who assumed they knew enough from a few paragraphs of outdated info.

Make sure you get a bone density scan soon and one in a year if you stay on pred long term. I say this because if you have the bone density loss side effect the faster they catch it the more they can do to prevent it from becoming serious by giving you bone builders and more calcium.

Congrats on the weight loss, I will be trying to lose weight after the baby comes.



Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

Post Edited (redrose77) : 4/26/2008 1:42:45 PM (GMT-6)


Heartsong
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 4/25/2008 2:40 PM (GMT -7)   

thanks for the encouragement and advice, jules and redrose.

I am currently down to 9 mg of pred, maintaining my weight loss (it bottomed out at 14 pounds).  My husband and my mom think I shouldn't lose any more or I'll look sickly. :-)   I'm just holding my breath knowing that it might not last.  I wasn't really overweight before, but now I feel better about how I look.  (I'm 43, so being 5'4" and 127 lbs feels really good for someone my age.) 

jules, my raynauds is really bad, too.  I'm curious how much warmer weather will affect it.  I'm not encouraged by how my fingers blanch when I enter a heavily air-conditioned room lately. 

I, too, have a space heater at work, in my classroom (I'm a teacher.)  My headmaster recently gave me permission to wear gloves while teaching.  It was funny.  I hadn't asked him for permission.  I just did it so I could cope.  I guess he knew I could reference a disability law if he didn't.

My biggest challenge now is getting back on the treadmill.  I was walking for 15 min (it's not much but it's all I could manage) every morning, but lately I've been SO TIRED and cranky.  I sleep as late as possible these days.  I'm looking forward to summer break like never before.

 

 


Post Edited (Heartsong) : 4/25/2008 3:53:45 PM (GMT-6)


julesandsherman
New Member


Date Joined Apr 2008
Total Posts : 2
   Posted 4/25/2008 3:40 PM (GMT -7)   
Thanks, Rosie, for the welcome

Heartsong - I take Nifedipine for the Raynaud's - are you taking anything? I find I have to wear sweaters all summer at work, because my co-workers like the place freezing cold!! I do much better in the summer (I live in Indiana, so it's hot & humid here), but on those days where it suddenly drops to 60, it's as bad as winter.
I know what you mean about tired - I had my gall bladder out early last month, and just am exhausted all the time... good excuse to take a warm bath and go to bed early all the time!

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 4/26/2008 12:22 PM (GMT -7)   
Heartsong,
 
See my post on the thread titled "new to the group" for the story of my case of mctd.
 
Raynauds is difficult particularly in the first year or so but it can get better.  There are meds you can take if it gets bad.  I have found that sitting inside in a cold room (actually does not have to be that cold) can be worse than being outside, dressed well in -10F temps.  My raynauds has gotten better over time but it still is annoying and my fingers are like ice sometimes.  Warmer weather will help but the first year I found that my fingers would turn purple while walking in 65 degree temps when the wind would blow and/or some clouds hid the sun.  Seems weird at first but you get used to it.  In general you will probably have to dress warmer and wear glove more than before.  Sitting and reading or watching tv can bring on raynauds as well.  You will learn to adjust your habits and dress to make yourself comfortable.
 
I returned to skiing last winter and was able to ski at -10F in 50 mph winds.  Was dressed in more layers than before getting sick and kept all but my thumbs warms so I could only ski about 45 mins at a time.
 
Raynauds can also affect other capillaries beside those in your fingers and hands so monitor your blood pressure carefully.  It is one of those secondary conditions that is usually just a nuisance but it can be more serious.
 
As for weight gain with prednisone many patients do not adjust their diets to it and gain weight.  I did not gain weight at all.  Too many do not understand that they  are more sedentary, might have lost muscle tissue as well, and continue to eat the same or even more than before.  It is not the prednisone it is their habits.  Avoid sweets and eat less carbs and you will be OK.  Pred does redistribute fat and that is how you get a moon face, hump back, and prednisone belly but those will go away as you taper down.  I had a round face and a belly even though I was not overweight but those are gone now.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


toto786
New Member


Date Joined Sep 2008
Total Posts : 1
   Posted 11/6/2008 6:17 AM (GMT -7)   

Hi ALL,

I'm fromm SOUTH AFRICA and recently moved from our countryside GREYTOWN (KZN MIDLANDS) to Durban (JANUARY 2008) and was healthy as a horse. In February 2008 I found swelling in my finger joints, pain in my knees and ankle. It was painful BUT not excruciating were i was not mobile. I kept on taking anti biotics, but the relief only lasted a few weeks.

On the 23 August 2008 I visited the GP and she forced me to have a blood sample drawn. My ANEs were of and my EPK was 1280. I was in shock not knowing what it was. I thought it was RA. I was refered by a friend to a RHEUMATOLOGIST on the 06 September 2008 (42 in our country to help a population of 45 million). In 10 mins she diagnosed me with MCTD (RA, LUPUS and Scleradxerma). At 37 in peak health, a fitness freak, playing league soccer and riding a quad bike weekly, I was devastated.

She put me on 30mg PREDS daily. A week earlier I started fasting (me being MUSLIM). At 3 am I took the PREDS and started feeling well. Next meal at 17:30. I developed a wheeze in my lower right lung which I laughed of.  darn..... by the 20 September 2008 I had no more strength to even climb into bed. I phoned the DOC and she told me I had POLYMYOSITIS. On the 23 September I was admitted to hospital and given IV SOLU MEDROL. On the 25 September at 14:00 I was discharged and given a dose of METHA TREXATE 2.5mg

That night while playing with my daughter I felt my chest getting heavy. I started struggling to breathe and then started coughing up blood. At 23:30 that night I back in hospital. I WAS IN PANIC MODE THINKING I'M DYING. The DOC suspected a LUNG EMBOLISM. In the morning, lung scans, x rays and CT scan and more.....BLOOD TESTS. I was released on the 24 September , taken of the METHA TREXATE and put on to IMURAN (AZAPRESS) 50mg and PREDS 30mg.

One month later at my next check up I'm mobile, able to drive, walk a bit but nothing strenuous. I walk on the beach with my kids and appreciate all that GOD has given me. My IMURAN is up to 75mg and my PREDS dose is lowered by 5mg every second week. Physically I am a bit weak, I have an OFF and ON pain above my shoulders, can't handle spicy food, got he shakes, get tired easliy BUT MOBILE> 

To all out there, I argue with my creator daily......LOL. But as someone said there are pepple out there WORSE OFF, and remember GOD only gives diseases to the STRONG. The weak won't handle it!

I am going to see a

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/6/2008 6:51 AM (GMT -7)   
Hi Toto !!!

Welcome to the forum!!!

((((((((( Toto ))))))))) Wow!! You got hit hard!! What a ride. Sounds like you were really blessed to have found a rheumy who could see you and treat you.

I am starting a new topic and copying your post to the new topic so the members here will see your post. It will get lost in this topic.

Glad you found us!! I think you'll find some great support here. There are a couple of others here with MCTD and polymyositis.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 11/6/2008 10:31 AM (GMT -7)   
Toto786,
 
Sorry you have mctd.  It can be a difficult disease(s) to diagnose and treat.  Hard to believe you have so few rheumys in your country although there is a shortage of them in the USA as well.  And not too many who know how to treat auto immune diseases as most treat arthritis patients.
 
Methotrexate can cause lung problems in some people so I am not surprised you had problems.
 
I had a very extreme case and my pm was resistant to treatment.  Lost 40 lbs of muscle in a week and started 2006 as a quadriplegic who could not swallow (had a feeding tube).  I was also very fit and active although almost twice your age so physical conditioning does not prevent the disease.  Almost died of liver failure due to the massive and rapid muscle breakdown but ivig saved my life. 
 
Since then I have had no flares and through physical, occupational and speech therapies and also working out on my own have come back substantially.  Today I can play golf, ski, practice tai chi and lead a fairly active life.  Not 100% but not bad for an old guy who seemed to have no hope less than 3 years ago.
 
If you have not had substantial muscle wasting and your doctors can get your immune system under control physical therapy and working out on your own can restore your strength.  However, it is not an easy task and will probably take several years but you have youth on your side and have been fit. 
 
Feel free to ask questions.  I don't know all the answers by any means but my case was extreme and complicated and my recovery was unprecedented. 
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 11/10/2008 3:41 AM (GMT -7)   
Hi all,
I’ve just joined this site. I have to say I’m sorry to see so many people here, but I’m glad to know I’m not alone in this. My ANA is 1:1280 Homogeneous, 1:1280 Few Nuclear Dots up from 1:640 six months ago and a CRP of 9.6 mg/l a rate 3x the high risk level.

I’ve been in denial for years living by the old adage “just walk it off” and “suck it up”. Only now after doing research into my conditions I recognize the continuous progression of my condition. Things I have just put to a hard day at work I now realize are symptoms of the condition. For years I’ve had trouble recuperating from injuries and suffered from several kidney infections. I now find myself unable to work with all over muscle pain, muscle spasms, joint pain, stiffness, cracking in all major joints and no energy to speak of. An hour at the pool trying to stay active and I hobble back to my car, but I’m not going to let that stop me.

Anyway here’s hoping all of you more of the good days than the bad ones.

Thanks for letting get this off my chest
BigBry
DX: IBS 00, MCTD 05, Depression 06, Sjogren's 07, GER 08  
Meds: Plaquenil 400mg, Prednisone 20mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg, Metoclop 10mg and numerous other supplements
 
Life is what you make of it.  Just something I try to remind myself every day.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/10/2008 7:58 AM (GMT -7)   
Welcome BigBry!!!

I started a new topic for you!! Most of the other members won't see your post in this topic.

Welcome to the forum!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Louisiania
New Member


Date Joined Nov 2009
Total Posts : 13
   Posted 11/29/2009 4:08 PM (GMT -7)   
Um, my names Louise,
And i was wondering if anyone could help me,
I'm 15 and underweight, i have all the characteristics of someone with MCTD
however, i dont understand what a few things mean;
Very high ANF titre,
Positive extractable nuclear antigens
positive anti-ro and RNP and ENA.
i've got an appointment on the 7th with the rheumatologist, but to be completley honest im scared, so i wanted to get a heads up on what hed say, umm i suffer from anaemia, raynauds, diffuse hair lose, weird colouring around my eyes and in general i am extremely pale, malaise depression and ect...
as you can tell ive been holding off the partying and having fun, ive been ill for almost a year now, and i just need some help.
THANKS. confused

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 11/29/2009 8:23 PM (GMT -7)   
Louise,
 
Hope you do not have MCTD.  You should understand that there is no "normal" presentation of the disease.  It is a complex mix of lupus, scleroderma and polymyositis and every case is unique.  There is a blood test that indicates you have mctd:  antibodies like anti RNP and a high ANA.  It can be very difficult to diagnose and can take months or even years in some cases.  Severity can range from mild to life threatening (like many auto immune diseases) but most cases are treatable.  An individual case case exhibit symptoms of one of the diseases, two of them, or all three.  Lupus has been described as the disease with a 1000 faces and mctd is more complicated but very similar.
 
Other patients have something like it but not as defined.  Undifferentitated connective tissue disease (UCTD). 
 
Here are some sites to investigate if you have not already done so.
 
 
 
 
 
Here is a site that will explain tests.
 
 
All of these sites are reputable and the source of good information but you will discover there will be conflicting information when researching auto immune diseases, particularly ones like mctd which is very rare.  Most of the symptoms you described could be from lupus alone.  Treatment for lupus or mctd is pretty much the same.  Prednisone is the first line treatment, various immunosuppressants like imuran and methotrexate, cellcept, IVIG, rituxan and others are also used sometimes in combination.  Each case responds to treatment differently.
 
Good luck and hope you can get some answers and effective treatment soon so you feel better. 
 
Bill
 
 
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


Louisiania
New Member


Date Joined Nov 2009
Total Posts : 13
   Posted 11/30/2009 3:58 AM (GMT -7)   
Thankyou for your reply,
i really appreciate it:)
What's the next step though?
The diagnosis has been changed continuously to CF, Rheumatoid arthiritis, lupus and such,
but if it is MCTD what does that actually limit?
i've tried to read up and understand as much as i could on the disease, but i only focused on the things that were negative, naturally.
How do people cope with it?
I'm sorry im so inquisitive but it concerns/worries me being ignorant to something like this.
Thank you for reading,
Louise x
P.s. i'd really appreciate it if someone who was diagnosed with it could get in touch, i'm really not sure how to ask, :)

Louisiania
New Member


Date Joined Nov 2009
Total Posts : 13
   Posted 11/30/2009 4:00 AM (GMT -7)   
Double P.s, hi to everyone as you can tell by abruptness im very new x

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 11/30/2009 6:59 AM (GMT -7)   
Every case of mctd is different and so is coping with the effects of it.  My case hit me very hard.  Lupus symptoms were fatigue, joints, and cognitive problems.  Scleroderma -  primarily raynauds.  Polymyositis hit me the worst and crippled me.  Once under control I worked very hard to recover and now lead an active life even though I am almost 70. 
 
You are young and have a good chance of leading a normal life but the disease must be diagnosed and controlled first.  If there are any secondary conditions these need to be controlled.  My advice is to take things a day at a time.  No one can predict how things are going to evolve but most cases are controlled and with proper care you should lead a normal and long life.  It does not help to worry about it or how it might evolve because you will drive yourself crazy. 
 
Define a new normal for yourself and lead the best and fullest life you can.  As you improve, define a new, new normal.
 
Just remember that auto immune diseases are different from others and very difficult to understand.  Every case is unique so there is no normal course of the disease.  Hope for a mild case but realize that for a time you might have less strength and energy.
 
Hope this makes sense to you.  I have come out of the deepest hole and life is good again.  Not the same but good nonetheless.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.

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