It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 08-15-2008, 11:46 AM   #1
Junior Member
(female)
 
Join Date: Aug 2008
Location: uk
Posts: 20
theartyone HB User
Mixed Connective Tissue Disorder?!

Hello

I have been diagnosed as having Mild Connective Tissue Disease and am trying to find out as much about it as possible. My symptoms are very similar to Lupus, and I am worried that I will eventually get Lupus. At the moment I am in pretty good health with occasional aching joints and Iritis in both eyes.

Here's my list of symptoms/conditions: three bouts of Iritis, Raynaud's phenomenon, positive ANA (1:256), haemophilia C, aching joints, anemia (very briefly, I spent four weeks raising my ferritin and am now okay),positive RNP and slightly low C4.

I was just wondering if anyone has been in a similar situation? I have been tested and have no damage to heart and lungs, so whatever I have is mild. I believe prevention is better than a cure, so I am trying to find out if there is anything I can do to prevent my condition from getting any worse.

 
Sponsors Lightbulb
   
Old 08-16-2008, 08:20 AM   #2
Senior Member
(female)
 
Angie10's Avatar
 
Join Date: Apr 2007
Location: MA, USA
Posts: 216
Angie10 HB User
Re: Mixed Connective Tissue Disorder?!

Hi there,

I'm wondering if MCD is the same as Undifferentiated Connective Tissue Disease, which is what I believe I have. Here are some of the test results and symptoms I have:

Postive & high ANA, positive Rheumatoid Factor, positive Anti-SSA (Ro) and Anti-SSB (La), and high sedimentation rate.

Joint pain (primarily in wrists, hands, and first two knuckles of each finger, knees and ankles with no swelling), occasional low grade fever, thinning hair, fatigue, occasional sores in mouth, Raynaud's, sun sensitivity (no rash), and rash on face that is rosacea and not malar rash. I had a brief period of anemia when I was trying to stay on a vegetarian diet, so I don't count that.

I also have Fibromyalgia, so often it is hard to tell what is the cause of the daily pain and fatigue. Now that I have been on name brand Plaquenil for over a year, I have greatly reduced the joint pain. In the winter I was in a lot of pain, so I was placed on an additional NSAID for a few months. In one of the permanent posts at the top of this discussion board is a link that provides information about UCTD. It provides very useful information.

I think that Plaquenil is a great source of treating the pain and hopefully preventing the disease from getting worse. Unfortunately, the recent Lupus like issues I have had developed over the past 1 to 2 years, so I'm not sure if my disease is progressing or not. I will have to wait and see how I do this winter.

Good luck to you and keep us posted on how you are doing!

 
Sponsors Lightbulb
   
Old 08-16-2008, 03:31 PM   #3
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 5,065
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Mixed Connective Tissue Disorder?!

Hi. Based on what I've read in hardcovers, MCTD and UCTD share some similarities but are different conditions. I think in MCTD, positive ANA & anti-RNP are flat-out "required", and Raynaud's is almost always present. Other characteristic features: puffy hands, heartburn, swallowing problems, and a higher risk for both pulmonary hypertension & interstitial lung scarring.

In contrast, I think UCTD really does mean "undifferentiated". While ANA is positive, joints hurt, fatigue is present, ETC.---the patients don't quite meet the more specific diagnostic criteria for any particular autoimune---yet they look and feel very "autoimmune-ish". But over time, some will meet tighter criteria & some won't... Those who DO meet more specific criteria are Dx'ed with such things as lupus, RA, scleroderma, Raynaud's, myositis, MCTD, etc. Others end up staying in the UCTD category. Others yet end up having no signs of disease.

I think all these conditions are medically viewed as treatable, not preventable. In any event, treatment & ongoing medical follow-ups are important. And if you are photosensitive (meaning sun exposure exacerbates your problems), sun avoidance/blocking are indicated.

In the U.S., some lupus hardcovers discuss MCTD---Dr. Daniel Wallace, for one. I'm not sure if Dr. Graham Hughes, the noted British rheumie, covers it, but chances are good he says something or other.

I hope you keep posting here. For now, sending you my best wishes, Vee

Last edited by VeeJ; 08-16-2008 at 03:48 PM. Reason: error

 
Old 08-17-2008, 04:16 AM   #4
Junior Member
(female)
 
Join Date: Aug 2008
Location: uk
Posts: 20
theartyone HB User
Re: Mixed Connective Tissue Disorder?!

Thank you for your post, we have very similar conditions I think. I tested negative for RF though, I will be pestering the doctor to rule out Lupus. I am certain there are further tests they could do to put my mind at ease.

 
Old 08-17-2008, 04:20 AM   #5
Junior Member
(female)
 
Join Date: Aug 2008
Location: uk
Posts: 20
theartyone HB User
Re: Mixed Connective Tissue Disorder?!

Quote:
Originally Posted by VeeJ View Post
Hi. Based on what I've read in hardcovers, MCTD and UCTD share some similarities but are different conditions. I think in MCTD, positive ANA & anti-RNP are flat-out "required", and Raynaud's is almost always present. Other characteristic features: puffy hands, heartburn, swallowing problems, and a higher risk for both pulmonary hypertension & interstitial lung scarring.

In the U.S., some lupus hardcovers discuss MCTD---Dr. Daniel Wallace, for one. I'm not sure if Dr. Graham Hughes, the noted British rheumie, covers it, but chances are good he says something or other.

I hope you keep posting here. For now, sending you my best wishes, Vee
Hi Vee, thanks for the useful information. I will see what Dr. Hughes says about MCTD. I have positive ANA, RNP and have had Raynaud's for years. I am fed up of the fatigue- it does come and go. I am fairly active though and am dreading the winter. I struggle a lot when it is cold, my joints and Raynaud's lead to me feeling very miserable.

 
Old 08-17-2008, 06:13 AM   #6
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 5,065
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Mixed Connective Tissue Disorder?!

Good morning. Were you given prescription meds? I think the meds used in MCTD are quite close to those used in lupus. i.e., in ascending order, from mildest to strongest, antimalarials (like Plaquenil); steroids; and immunosuppressants.

Plaquenil (the mildest) is appropriate for people (like me, for one) *without* major organ involvement. It's helped me dramatically! My fatigue & pain are less, and rashes ceased. Further, my decades (!) of chronic GI & urinary problems virtually disappeared; my B-12 & Folate blood levels came back to normal range; my migraines ceased; etc.

Additionally, many people with lupus also take OTC NSAID's. I couldn't do without, as I'm a walking barometer.

I suspect most people with your range & level of symptoms need some sort of meds---but OBVIOUSLY I'm merely a patient. Bye for now, Vee

 
Old 08-18-2008, 04:30 PM   #7
Senior Member
(female)
 
Angie10's Avatar
 
Join Date: Apr 2007
Location: MA, USA
Posts: 216
Angie10 HB User
Re: Mixed Connective Tissue Disorder?!

Hi there,

Like Vee, I cannot function without Plaquenil and NSAIDS when it is real bad. In the winter I had to be on a NSAID for about three months because I had such horrible joint pain in my wrists, hands, and fingers(first two knuckles from hands - not joints closest to tips of fingers). It made typing a joy.

I am also dreading the winter. Due to the fact that it takes 3 to 4 months for the Plaquenil to work, now would be a great time to start if your doctor recommends it. Also, do not be surprised if your doctor does not want to give you a definitive diagnosis. My doctor is taking a wait and see approach because of the overlapping conditions.

Take care and keep us posted!

 
Old 09-14-2008, 04:54 AM   #8
Newbie
(female)
 
Join Date: Sep 2008
Location: New Smyrna Beach, Florida, USA
Posts: 2
sandyseapath HB User
Re: Mixed Connective Tissue Disorder?!

Quote:
Originally Posted by Angie10 View Post
Hi there,

I'm wondering if MCD is the same as Undifferentiated Connective Tissue Disease, which is what I believe I have. Here are some of the test results and symptoms I have:

Postive & high ANA, positive Rheumatoid Factor, positive Anti-SSA (Ro) and Anti-SSB (La), and high sedimentation rate.

Joint pain (primarily in wrists, hands, and first two knuckles of each finger, knees and ankles with no swelling), occasional low grade fever, thinning hair, fatigue, occasional sores in mouth, Raynaud's, sun sensitivity (no rash), and rash on face that is rosacea and not malar rash. I had a brief period of anemia when I was trying to stay on a vegetarian diet, so I don't count that.

I also have Fibromyalgia, so often it is hard to tell what is the cause of the daily pain and fatigue. Now that I have been on name brand Plaquenil for over a year, I have greatly reduced the joint pain. In the winter I was in a lot of pain, so I was placed on an additional NSAID for a few months. In one of the permanent posts at the top of this discussion board is a link that provides information about UCTD. It provides very useful information.

I think that Plaquenil is a great source of treating the pain and hopefully preventing the disease from getting worse. Unfortunately, the recent Lupus like issues I have had developed over the past 1 to 2 years, so I'm not sure if my disease is progressing or not. I will have to wait and see how I do this winter.

Good luck to you and keep us posted on how you are doing!
Hi There,

I have an apppointment to see a Rheumatologist this week. I have been trying to figure out what's wrong with me for about 8 years.

Question: I have a severe, burning face that has been diagnosed as rosacea.

Did the Plaquenil help your rosacea (you said that you definately have rosacea and
not the lupus rash).

Thanks so much,

Kathy

 
Old 09-14-2008, 04:03 PM   #9
Junior Member
(female)
 
Join Date: May 2008
Location: Delray Beach, FL, USA
Posts: 28
grace70 HB User
Re: Mixed Connective Tissue Disorder?!

HI
I too have MCTD. Just diagnosed a few months back. I have a hard time finding info on it and my rheumie treats me with the same lupus meds -plaquenil and once a steriod injection. Anyway I have the same symptoms and still I am achy and extremely fatiqued. My legs still burn and my body aches. I am nauseous a lot. I did have anemia, required blood transfusions and pleurisy.

I am still waiting for the full effect of the plaquenil. As Vee stated Dr. wallace books touches on MCTD but I still think I have more of the lupus end of it. I did get tested for myositis (high CPK) which shows inflammation of muscles and an EMG test. It's like people with MCTD get all the bad parts of the three diseases. I am to confused.

One site said that MCTD is classically" considered as an "overlap" of three diseases, systemic lupus erythematosus, scleroderma, and polymyositis. Patients with this pattern illness have features of each of these three diseases. Plus have very high quantities of antinuclear antibodies (ANAs) and antibodies to ribonucleoprotein (anti-RNP) detectable in their blood. I do have the high ANA and anti-RNP. I too am RF negative. Please post if you find any more info. I hope you find what you are looking for. Feel better.

 
Old 09-14-2008, 11:37 PM   #10
Junior Member
(female)
 
Join Date: Aug 2008
Location: uk
Posts: 20
theartyone HB User
Re: Mixed Connective Tissue Disorder?!

Hello thank you for your response. I do have elevated ANA and anti-RNP antibodies and am currently taking ibuprofan twice a day. I do feel better, and have been trying to make sure I don't get cold. I have an appointment with a haemotologist tomorrow, so we'll see what they find. I could live with MCTD easily but my main problem at the moment is Iritis in both eyes, this is caused by inflammation in my body. I would be ecstatic if my eye problems were resolved. I shall post again when I find out my results from Haemotology.

 
Old 09-15-2008, 04:36 AM   #11
Newbie
(female)
 
Join Date: Sep 2008
Location: New Smyrna Beach, Florida, USA
Posts: 2
sandyseapath HB User
Re: Mixed Connective Tissue Disorder?!

Quote:
Originally Posted by Angie10 View Post
Hi there,

Like Vee, I cannot function without Plaquenil and NSAIDS when it is real bad. In the winter I had to be on a NSAID for about three months because I had such horrible joint pain in my wrists, hands, and fingers(first two knuckles from hands - not joints closest to tips of fingers). It made typing a joy.

I am also dreading the winter. Due to the fact that it takes 3 to 4 months for the Plaquenil to work, now would be a great time to start if your doctor recommends it. Also, do not be surprised if your doctor does not want to give you a definitive diagnosis. My doctor is taking a wait and see approach because of the overlapping conditions.

Take care and keep us posted!
Hey Angie,

Thanks for your quick reply. I see the doctor on Wednesday. Thanks for your words of encouragement. I am wondering if he doesn't give me a diagnosis if he will go just go ahead and give me the Plaquenil. Sounds like a drug that could give me some real help.

About my question--how is your "real" rosacea? I have that as well. Did
the Plaquenil make it better, worse or the same? Just wondering how if effects actual rosacea?

Thanks so much

Kathy

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Myofascial pain syndrome vs Fibromyalgia vs mixed connective tissue disease suncat Fibromyalgia 2 10-15-2009 06:09 PM
Mixed Connective Tissue Disease suecanada60 Immune Disorders 15 01-28-2009 06:46 PM
Mixed Connective Tissue Disease. mommygiraffe Immune Disorders 1 01-24-2007 07:06 AM
Mono/Lupus/Mixed Connective Tissue/Raynauds karadavis1982 Raynaud's Syndrome 2 08-23-2006 05:11 AM
Undifferential Connective Tissue Disease kiddoat48 Lupus 9 08-09-2005 06:02 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 03:38 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!