Mixed Connective Tissue Disease

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Bambina
New Member


Date Joined Oct 2016
Total Posts : 2
   Posted 10/25/2016 10:35 PM (GMT -6)   
Hello ladies (and gentlemen),

I was recently diagnosed with MCTD. I was prescribed Methotrexate but have not taken it for fear of the side effects. I go to my rheumy next week and I am afraid to tell her that I've instead been taking herbal remedies.

More than anything, I have been a bit depressed due to the diagnosis. My symptoms are not as bad as some of those in a support group I belong to but I am scared since I am not following doctor's orders. rolleyes

I hope to find out more from you with more experience in this dreadful disease.

Blessings to all. Thank you for having me.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1645
   Posted 10/26/2016 3:48 AM (GMT -6)   
Welcome to our forum Bambina! A new diagnosis is always hard and many of us acutely go through the stages of grief, especially when the disease causes major quality of life problems. So depression is common. If your depression gets to the point that it changes your daily activity, be sure to tell your doc.

My memory isn't the greatest, but I do remember trying one herbal remedy because a friend insisted. It made my symptoms worse. I'm not an advocate of herbal remedies. The question is, do they relieve your symptoms? If they do, tell your doc but also be straightforward about your fears of taking methotrexate. I took it years ago and it relieved my symptoms with no noticeable side effects. I hope your visit to your doc goes well. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

BreRosie
Regular Member


Date Joined Jun 2016
Total Posts : 47
   Posted 10/26/2016 4:00 AM (GMT -6)   
Hello Bambina. I was diagnosed this summer with Lupus and I have been taking Hydroxychloriquinn since July and just started mexothrexate last week. Before taking the hydrox. I had a headache almost everyday and I was losing a lot of hair. I even have a small bald patch. The hydrox. has helped the headaches and the hair issue . I was still flaring a couple times a month so my dr. added the mtx. to help and to get me off the pred. dose . I was terrified about the side effects of the mtx. but I didn't have any that I could tell. It helps to take it before bed and you must take folic acid with it. Without the pred. my body hurt so much I couldn't even wash my hair without wanting to cry. My symptoms are also not as bad as other members. I have no organ involvement. Hopefully I won't since from my understanding(someone please correct if I'm wrong) The hydroxychloriquinne is supposed to slow down the progression of the disease. I would talk w/ your doc about your concerns and the pro's and con's of using them. I hope you feel better and get the answers you need!
Thyroid disease 2015, Lupus and Sjogrens July 2016 and Fibro October 2016
I'm Just gonna keep on smilling

Bambina
New Member


Date Joined Oct 2016
Total Posts : 2
   Posted 10/26/2016 10:11 AM (GMT -6)   
Thank you, ladies. The herbal supplements have helped tremendously, I also eat organic. My hair stopped falling out and am not in pain. When my rheumy had Xrays done on my hands, she said they looked fine.

Not sure if taking the prescription drug is worth the side effects at this point but I will discuss it with her at my next appointment. I will talk to her about my depression, it is a daily battle.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1329
   Posted 10/30/2016 3:44 PM (GMT -6)   
B

MCTD is an overlap syndrome and patients can have symptoms of SLE Lupus, scleroderma, polymyositis or dermatomyositis and sometimes other autoimmune symptoms. It presents differently in each patient and can be very mild or even life threatening. It is nothing to mess with by ignoring doctors orders. Eating healthy and taking supplements is fine for general health but has nothing to do with treating MCTD. If you are already exhibiting symptoms you should be on some form of treatment. Standard protocols are prednisone and something else like methotrexate or azathioprine and there are others. Goal is to control symptoms and taper down or off prednisone which is not generally tolerated well for long term treatment (usually meaning years). Early diagnosis and aggressive treatment works best with all AI diseases.

I have mctd for the past 11 years and presented with severe and complicated lupus symptoms and then polymyositis kicked in after a couple of months. After losing 40 lbs of muscle in a week (not a typo) even though on high doses of steroids I was saved with a treatment of IVIG. I was quadriplegic with a feeding tube with little to look forward to in life. After a long period of rehab I have returned to an active life of downhill skiing, golf, hiking and other activities. My disease has been well controlled although lupus popped up after 8 years of remission and I have been dealing with that the past 2 years.

Few cases are as extreme as mine was but it illustrates just how powerful the disease can be. If you want more details the Myositis Association made a video of my patient story and it can be viewed on YouTube by search my name.

Most patients tolerate methotrexate well and if you don't there are other treatment options. All treatments for AI diseases have a long list of side effects, most of which patients don't get. And you might tolerate the treatment well. Hope you make the right decision and get your mctd under control.

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.
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