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kkut
New Member


Date Joined Oct 2012
Total Posts : 3
   Posted 10/28/2012 2:19 PM (GMT -6)   
I am a 54 year old woman just diagnosed with mixed connective tissue disease and I'm scared to death and feel so alone.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 11612
   Posted 10/28/2012 3:24 PM (GMT -6)   
((((((((((((((((((gentle hug))))))))))))))))))

Hang in there. It's not a death sentence....
With proper medical care and a good health regime you can manage this disease.
This is a great place for venting, support, and questions.

Your world did not end, you just had a shift in your perception.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

BeachGirl777
New Member


Date Joined Jan 2012
Total Posts : 13
   Posted 10/28/2012 10:15 PM (GMT -6)   
Good advice from Joy and completely agree. I was just diagnosed in January with MCTD, it took a few months for the meds to kick in but I am finding my "new normal". I have had to make compromises (used to be a distance runner and have had to stop running for now)- but I still lead an active lifestyle. I work full time and spent the last few days on vacation hiking mountains. I do have to listen to my body and rest more as well as watch out for the sun.

I felt the same way when I was first diagnosed too and reading the posts has been great therapy for me to see others dealing with the same problems and struggles that I have found myself facing.

Take care of yourself and find a good rheum who will work with you.

Amber

kkut
New Member


Date Joined Oct 2012
Total Posts : 3
   Posted 10/29/2012 3:28 AM (GMT -6)   
What kind of meds do you take? More important what are the side affects? I thought there was no meds for this disease except steroids

BeachGirl777
New Member


Date Joined Jan 2012
Total Posts : 13
   Posted 10/29/2012 8:10 AM (GMT -6)   
I am currently on Plaquenil (anti malarial). I got placed on the brand name drug because the generic gave me a skin rash. I had an upset stomach at first but that went away after a week or two. I get an eye exam every 6 months to ensure the drug is not causing any issues. It has been a life saver for me, I had terrible muscle aches and skin rashes before taking Plaquenil. I also have dry eyes and am on restasis and a fish oil supplement as well. Some people do take steroids, but depending on what you need to be treated for you may or may not need them.

kkut
New Member


Date Joined Oct 2012
Total Posts : 3
   Posted 10/29/2012 8:18 AM (GMT -6)   
I haven't seen the reumatologist since my test results have come back. I am having pain in my feet. Its hard to walk. Especially stairs. My left wrist hurts as does my neck. I was wondering do these flare ups start and end abruptly. Is it true stress can cause a flare up? I have so many questions

BeachGirl777
New Member


Date Joined Jan 2012
Total Posts : 13
   Posted 10/29/2012 9:21 AM (GMT -6)   
I can sympathize, I had the aches in my feet as well. Stress does seem to make symptoms much worse. Even medication controlled, stress will take me out a day or two. Once they get you on a treatment, you will start feeling better. The plaquenil took some time for me. I started feeling some relief in a couple of weeks, the symptoms were there but more manageable. It took a good 4-6 months to feel like myself again. I hope you don't have too long to wait to get in to the rheum. Until then, take care of yourself and rest when you need it. If you are a researcher, don't scare yourself on the Internet....I completely freaked myself out by the time my PCP gave me my ANA results to the time I got in to see the rheum. I made myself so sick from stress I ended up having to miss a week o work due to a major flare.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 11612
   Posted 10/29/2012 11:05 AM (GMT -6)   
Right now I'm on plaquenil and tramadol. It does take time to get the plaquenil to kick in. Steriods are used only as last resort during a major flare.
There are many medicines to help, but they move up in steps:
1. plaquenil
2. MTX or Cellcept (sometimes both)
3. Biologics

Steroids can be added in at any time, but it's best to try to make do without it if you can. I take a taper pack every once in awhile to tame a flare.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1190
   Posted 11/1/2012 10:00 PM (GMT -6)   
KK,

I have had mctd since 2005 and had an extreme case which did not respond to steroids. IVIG tamed my immune system and I took prednisone and imuran for many years after that. Today, I am off all controlling meds.

There are many other possible treatments for mctd but prednisone is usually the first that is tried because it usually works, is fast acting and inexpensive. Docs will put you on some other prednisone sparing drug like imuran or methotrexate. Several others have already been mentioned and there are others. Any of these treatments have potential side effects but the operative word is "potential." Not everyone has terrible side effects with a given drug but some do. The most important things to focus on is not to worry about side effects which might not happen but to get your disease diagnosed and under control as quickly as possible. The sooner you can control your immune system the better the outcome you can expect. If a given treatment causes serious side effects then you can stop it and shift to another treatment or combination of treatments.

Mctd is a disease with endless variation in presentation, severity, response to treatment so no one, not even your doctors can tell you anything with accuracy. Most of the people on this forum with mctd have mild cases compared to the potential of the disease. Also, some with mctd have different diseases than the tradtional description of sle lupus, scleroderma and polymyositis.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

einsteinb
New Member


Date Joined Nov 2012
Total Posts : 7
   Posted 11/1/2012 11:02 PM (GMT -6)   
My 2 sisters and I have lupus. I am straight Lupus w/ fibro, but my two sisters have the lupus with the mixed connective tissue disorder. They are doing fine as long as they stay on the meds and take care of the illness. I cross stitched a saying for my doctor's office, it said. .... The way to live a long life is to have a chronic illness and learn to take care of it! You will be fine. The first initial dx is scary, but hang in.
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