Affected by Lupus or a MCTD? Tell your story

[Adminஐﻬ]

Affected by Lupus or a MCTD? Tell your story

[susie4health]

Hello All,
Where do start! I believe the Lord has a plan for our lives, and I did not understand why I have lived a life of trials and tribulations, and blessed with gettingmarried young, having my daughter at 18 years old, getting married at 21 and then having a son in 1993. Life takes strang paths. Right after I was prego, I was almost 18 and a senior in High School. I was welcomed by opened arms, given a baby shower; and got closer to God. However, after being with my boyfriend for 4-years his family thought it was more important to not keep my baby. This went against all of what I believe because I was adopted and my Mom gave me a chance to live. So with that said, I had a lot of support by my parents, graduated high school and went to college directly after for 2-years until I had to go to work. I was single for about 2 years, then I met my soon to be-ex husband who was a loving, caring and very much in Love with me and my daughter which he adopted. Although he had his issues that I did not agree upon, he was from a big, Italian family, and even spoke the language. My daughter ALSO half Italian so she was TRULEY HIS daughter! He treated me like gold, cooked, cleaned, and I was a very successful VP in different Corporations. However, in 2004 I got sick after I had a few surgeries...started with thinking I had ovarian cancer, which I did not but had to have one removed. Then I had carpal and radial tunnel surgery. OH, MY HUSBAND AT 32 ALSO HAD A HEART ATTACK AFTER HIS DAD DIED THAT SUMMER.  At this point, I started to get pain all over my body, bones hurt, depression, anxiety, and thyroid, fatigue, but IT TOOK 4-YEARSTO SHOW UP IN MY blood test that I have Mixed Connective Tissue Disease with overlap of Lupus and Graves...I was Kay for y years, but had to be on pain meads on daily basis. Tried others, but this was the only thing that could keep me running a business as the VP of Operations.However, the docs thought it was just  (not just) but at least I had a name to this suffering. As for today, .I'm getting worse with new symptoms of pink bruising,burning tongue, sores in mouth, purple knuckles and could not walk on left-foot. Put on new steroids, but still feeling worse. Going away for a treatment center in San Diego a treatment center next week for detox and other therapy. My questions is can I live for a long time???? Just need to hear from other going through this? and the outcome of our life ????40 ow, single and starting life over again

[Adminஐﻬ]

Hello All,
Where do start! I believe the Lord has a plan for our lives, and I did not understand why I have lived a life of trials and tribulations, and blessed with gettingmarried young, having my daughter at 18 years old, getting married at 21 and then having a son in 1993. Life takes strang paths. Right after I was prego, I was almost 18 and a senior in High School. I was welcomed by opened arms, given a baby shower; and got closer to God. However, after being with my boyfriend for 4-years his family thought it was more important to not keep my baby. This went against all of what I believe because I was adopted and my Mom gave me a chance to live. So with that said, I had a lot of support by my parents, graduated high school and went to college directly after for 2-years until I had to go to work. I was single for about 2 years, then I met my soon to be-ex husband who was a loving, caring and very much in Love with me and my daughter which he adopted. Although he had his issues that I did not agree upon, he was from a big, Italian family, and even spoke the language. My daughter ALSO half Italian so she was TRULEY HIS daughter! He treated me like gold, cooked, cleaned, and I was a very successful VP in different Corporations. However, in 2004 I got sick after I had a few surgeries...started with thinking I had ovarian cancer, which I did not but had to have one removed. Then I had carpal and radial tunnel surgery. OH, MY HUSBAND AT 32 ALSO HAD A HEART ATTACK AFTER HIS DAD DIED THAT SUMMER.  At this point, I started to get pain all over my body, bones hurt, depression, anxiety, and thyroid, fatigue, but IT TOOK 4-YEARSTO SHOW UP IN MY blood test that I have Mixed Connective Tissue Disease with overlap of Lupus and Graves...I was Kay for y years, but had to be on pain meads on daily basis. Tried others, but this was the only thing that could keep me running a business as the VP of Operations.However, the docs thought it was just  (not just) but at least I had a name to this suffering. As for today, .I'm getting worse with new symptoms of pink bruising,burning tongue, sores in mouth, purple knuckles and could not walk on left-foot. Put on new steroids, but still feeling worse. Going away for a treatment center in San Diego a treatment center next week for detox and other therapy. My questions is can I live for a long time???? Just need to hear from other going through this? and the outcome of our life ????40 ow, single and starting life over again

Oh Suzy
Yes we live for a long time, a whole lifetime.
It may be filled with pain and other issues, but we are very much normal other than that.
Just try to get your pain levels controled, eat well, rest, etc. Basically try to live normally as before but you will have bad days and you'll have good days.

Your life story with children sounds like mine, I got married at 18 had a daughter as soon as I turned 19, followed by a son 14 months later at 20.
Husbands may come and go, but our children are ours to keep

you hang tight things are scarey right now till you hear from more patients.
Glad to have you here,
Kathy

[andread]

Affected by Lupus or a MCTD? Tell your story

I am 45 years old, and over a year ago I began having pains in my wrists.  I saw an orthopedic but later realized the issue was more than my wrists.  I began having pain in my ankles, knees and swollen fingers/knuckles.  I saw my primary who ran some blood tests that confirmed I had something going on.  I now see a Rheumatologist and have been on Plaquenel and various NSAIDS for nine months.  It is so very frustrating to feel pain almost everyday.  Mornings are the most difficult, and I was a real morning person.  At my last visit the Dr used the term MCTD.  I was sure I had RA but have done more research on MCTD and see that it is its own beast.  I had a second opinion and they pretty much said the same things.  I guess I have to do the trial and error with meds which is so very tiring. ( I have been thru that for my treatment of Depression)  I try to be strong and fight thru the pain, some days are easier than others.  Its frustrating that it is all internal  and you cant really see much externally so here you are feeling tired and in pain but you "look" fine from the outside.  I have a strong faith, and know that God has a purpose for me and that really helps.

[Adminஐﻬ]

Mixed Connective Tissue

Patients with mixed connective tissue disease often present with tender puffy sausage-shaped fingers, as in this picture.

Notice the nail beds curved in on sides


What is mixed connective tissue disease?

Mixed connective tissue disease, as first described in 1972, 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. They also typically have very high quantities of antinuclear antibodies (ANAs) and antibodies to ribonucleoprotein (anti-RNP) detectable in their blood. The symptoms of many of these patients eventually evolve to become dominated by features of one of three component illnesses, most commonly scleroderma.

It is now known that overlap syndromes can occur that involve any combination of the connective tissue diseases. Therefore, for example, patients can have a combination of rheumatoid arthritis and systemic lupus erythematosus (hence, the coined name "rhupus").


How is mixed connective tissue disease diagnosed?

Today, true mixed connective tissue disease is diagnosed when patients demonstrate the clinical features (exam findings) of overlap illnesses (as described above) and have high amounts of the antibodies ANA and anti-RNP in their blood. Mixed connective tissue disease patients do not typically have antibodies such as dsDNA, Scl70, which are particularly common in systemic lupus erythematosus and scleroderma respectively.


How is mixed connective tissue disease treated?

The treatment of mixed connective tissue disease is based on which features are causing symptoms. The prognosis (outlook) varies accordingly. Therapies must be targeted for each of the organ systems affected. In general, treatment is often directed at suppressing the inflammation present in the tissues by using anti-inflammatory and immunosuppressive medications. These medications include nonsteroidal anti-inflammatory drugs (NSAIDs), cortisone drugs/steroids (such as prednisone), antimalarial drugs (hydroxychloroquine), and cytotoxic drugs (such as methotrexate, azathioprine, and cyclophosphamide). Organ damage, such as in the kidneys, can require additional treatments directed at high blood pressure, etc.

For the joint and muscle pains of mixed connective tissue disease, treatment options include NSAIDs, low-dose prednisone, hydroxychloroquine, and methotrexate can be helpful. Sometimes TNF blockers infliximab (Remicade), etanercept (Enbrel), or adalimumab (Humira) are considered for inflammatory arthritis. Physical therapy for certain joints is sometimes helpful. For pulmonary hypertension, medications that tend to open the arteries to the lungs are used along with blood thinning drugs and even supplemental oxygen. For interstitial lung disease, prednisone and cyclophosphamide are considered. To prevent damage to the kidneys, angiotensin converting enzyme inhibitors, such as captopril (Capoten), enalapril (Vasotec) are used, especially if blood pressure is elevated. Esophagus irritation and heartburn can be prevented by elevating the head of the bed and relieved with omeprazole (Prilosec) or lansoprazole (Prevacid). Antacids can also be helpful. Constipation, cramping and diarrhea is sometimes caused by bacteria that can be treated with tetracycline or erythromycin.

For Raynaud's phenomenon, patients are recommended to use hand- and body-warming techniques while protecting the fingers from injury. Nifedipine (Procardia), losartan (Cozaar, Hyzaar), and nitroglycerin cream are used to dilate the constricted blood vessels. Severe RP can lead to gangrene and the loss of digits. In rare cases of severe disease, nerve surgery called "sympathectomy" is sometimes considered. In order to prevent blood vessel spasming, the nerves that stimulate the constriction of the vessels (sympathetic nerves) are surgically interrupted. Usually, this is performed during an operation that is localized to the sides of the base of the fingers at the hand. Through small incisions the tiny nerves around the blood vessels are stripped away. This procedure is referred to as a digital sympathectomy.

Mixed Connective Tissue Disease At A Glance
Connective tissues are the framework of the cells of the body.
Mixed connective tissue disease is an "overlap" combination of connective tissue diseases.
Diagnosis of mixed connective tissue disease is supported by detecting abnormal antibodies in the blood.
Treatment of mixed connective tissue disease is directed at suppressing immune-related inflammation of tissues.

[cathy]

Hello.  I am new to this site.  I have had fibromyalgia for most of my life, but recently have had a high RNP lab.  The level was >8.0.  My ANA is negative as is all the other tests they did.  Can anyone tell me what this means?  My Dr mentioned MCTD, but I don't know anything about it.  Can you have MCTD if your ANA is negative?  What does it indicate if the only abnormal test was the high RNP..?  Any information will be much appreciated.  Thanks, Cathy

[Adminஐﻬ]

Hello.  I am new to this site.  I have had fibromyalgia for most of my life, but recently have had a high RNP lab.  The level was >8.0.  My ANA is negative as is all the other tests they did.  Can anyone tell me what this means?  My Dr mentioned MCTD, but I don't know anything about it.  Can you have MCTD if your ANA is negative?  What does it indicate if the only abnormal test was the high RNP..?  Any information will be much appreciated.  Thanks, Cathy

Hello Cathy
What did your Dr say about this test ? What MCTD did he diagnose you with beside Fibro??
Did you ask him to explain the high RNP?
Did he tell you it was high or did you know the level is a high level?
Gentle Hugs, wishing you pain free days !

[cathy]

My Dr is a Holistic Physician.  He told me that it was a MCTD, but not a lot about it. I will be seeing him again in January and now that I have read up on this a little, I will have more questions.   He wants to treat it with Segment therapy, but I'm wondering if I should also see my Rheumatologist?  What do you feel it means to have only a high RNP?  Thanks for any words of wisdom.  Cathy

[Adminஐﻬ]

My Dr is a Holistic Physician.  He told me that it was a MCTD, but not a lot about it. I will be seeing him again in January and now that I have read up on this a little, I will have more questions.   He wants to treat it with Segment therapy, but I'm wondering if I should also see my Rheumatologist?  What do you feel it means to have only a high RNP?  Thanks for any words of wisdom.  Cathy

Cathy here is a link  to Segment therapy http://www.ncbi.nlm.nih.gov/pubmed/9395709
"Segment therapy: the effects of ultrasound and benzocaine spray in the treatment of contractures and spasticity."
I have no access to my medical records right now to look up my lab values to understand more of the RNP. Have they ruled out Sclerderma? <sp> Any lung problems?
Hope it helps
MERRY CHRISTMAS!!!

[Bridget]

 
Hi all, sometimes all you can do is laugh first, followed by a really big cry. I was diagnosed with mctd around 7 years ago. Everyday is different as many of you know. My favorite is, after you have missed a few days of work AGAIN, your coworkers say, looks like your feeling better. (*&##!@#) Anyone who can relate to the crappy way you feel, and your self esteem falls flat on the floor like a ton of bricks. Oh please just for one day, cut us some slack. Looking for people to relate, and share with. People who dont just say they understand, but have actually been there

[Adminஐﻬ]

Hi all, sometimes all you can do is laugh first, followed by a really big cry. I was diagnosed with mctd around 7 years ago. Everyday is different as many of you know. My favorite is, after you have missed a few days of work AGAIN, your coworkers say, looks like your feeling better. (*&##!@#) Anyone who can relate to the crappy way you feel, and your self esteem falls flat on the floor like a ton of bricks. Oh please just for one day, cut us some slack. Looking for people to relate, and share with. People who dont just say they understand, but have actually been there

Hello Bridget and welcome ! I am so sorry to read you have MCTD.. oh yes if not coworkers.. how about family members that think you are faking it? Or being told by them  you just need to go to bed early and get more sleep.
I can totally relate.. it's mentally exhausting and painful. Normal healthy people don't understnad.
This site is more active over on Facebook .. www.Facebook.com/LupusMCTDFoundation
Add me and I'll give you the discussion board there as well as feel free to post on my wall. Over 1,000 patients (and a few family members)