MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
I am a 23 year old female, and have recently been diagnosed with MCTD.
After several years of doctor's not taking my symptoms seriously, I have finally been diagnosed with MCTD about a month ago. A couple years ago, I woke up with severe joint pain, could not get myself out of bed, couldn't sleep, had a lack of apetite, and lost nearly 30 lbs within a month. I made multiple visits to many doctors, and doctors were concluding that it was probably a viral infection or stress. I was prescribed sleeping pills to help me sleep, and was told that it would go away.
Three years later, the same thing happened. However, it was worse! I could not get myself out of bed, and needed assistance to go to the bathroom. Climbing a set of stairs was impossible and I was in pain everywhere. I finally met a doctor who had gone through the same events I did, and actually believed my symptoms. Whenever I explained to Doctors that I had pain everywhere, they would give me the look as if I was lying, or making stuff up. So when I met this Doctor, it was quite a relief and I finally had faith that I could get better.
The Diagnosing period was pretty tough for me as I thought I had RA - Rheumatoid Arthritis, and then thought I had Lupus, and now have been officially diagnosed with MCTD. I have been currently prescribed with Methotrexate injections of 25 mg once every week, which I have to self-inject myself with. Although, I have a lot of family that can inject me, I would like to do it on my own as I do not want to feel dependent on someone else. My doctor has also prescribed me with hydroxychloroquine which I am taking as well. I've also been given folic acid supplements to take three times a week. My side effects do not get bad till the 36 - 48 hour mark after the injection.
I am here on this page, as I do not know what to expect from this disease. I have quit drinking, and find it very uncomfortable to explain to people as to why I do not want to drink or cannot drink. Being 23, I used to be dependent on alcohol to have fun at social events. I went to my first social event this past weekend, and did not drink. It wasn't that bad, but it definitely a lifestyle change that I need to embrace and adapt to.
The most important reason why I am here on this page, is that I am scared! I do not know what to expect, and after several google searches, I see people indicating that if you get treated right away you are for sure given a minimum of 10 years. I am confused. I am young, I want to live, and build a family and grow old with my partner, when I get one. I do not know what to expect, and I do not want to seem as the sick one in my family. I do not like being identified with a disease, because I don't want people to pity me. I need a support group that doesn't identify me as being different, and being diseased. Hence the reason why I joined this support group.
I apologize in advance for this long essay. However, I will be there for all of you and I would like to take you on my journey as my family in fighting or coping with MCTD. I thank you all in advance for your support, love and kindness. <3
Mary Ann
I'm new here and just really learning about this condition as well. I also read the 10year thing but decided that doesn't apply to me. Best not to put too much faith in the internet and all the scary things out there.
I'm choosing and seeking a natural way (mostly) to deal with mctd and asking others to share their findings.
Hopefully once you find a course of treatment that works you can have a couple drinks and live a normal life...however long it may last.
Get a positive kick ass attitude and a slogan to remind yourself...like YOLO.
(you only live once).
Doz
What I don't do is put myself in situations that might require sustained exercise without rest breaks for over 45 minutes.
The 10-year number is completely bogus-- I think that's something off the Mayo clinic website that just got repeated a million times, and that's PR copy, not peer reviewed literature. We've lost very, very few people on this board that we know about, and a recent study from Norway (where health care is way better than in the US, obviously) says the percentage of people who have a more serious presentation, or who convert to Scleroderma, is actually quite low.
I don't know that much about what meds were tried already, but I am very curious about why Methotrexate is being prescribed for you just at this particular moment-- this is an extremely toxic drug with many long-term side effects, and it has never had a lot of fans in this support group. Maybe there were two or three people who said, "Great drug, changed my life!" (and I met someone who told me this exactly once) but it does not get as many positive reviews as Plaquenil.
Losing 30 pounds in a month is definitely very serious, I get that, but I'm still not sure what symptoms justify such aggressive treatment. Did they try a few rounds of prednisone? Did they try plaquenil alone? Did they suggest CBD oil with small amounts of THC, or the lower-risk opiates like Tylenol and Codeine or Hydrocodone in low doses?
All of the drugs I listed have a better side effect profile than methotrexate, with the possible exception of opiates if, and only if, you have issues with addiction.
If you have lung involvement? Sure, then I can understand why you'd be put on methotrexate. Other organ dysfunction? Well, yeah, maybe then, too-- but it's a drug that's hard on your liver, so even then it would be a tough call.
Methotrexate is part of a class of drugs known as DMARDs, or Disease Modifying Anti-rheumatic drugs. This is, IMHO, a largely fictional classification-- all these drugs do to "modify" the disease is reduce immune function, and they are blunt instruments-- decrease immune function that's necessary as well as what's harmful.
If you're one of the lucky ones, and have a great response to this drug, hey, that's great! If you've got life threatening symptoms that can't be treated any other way, there aren't a lot of options-- I'm sure I'd take methotrexate, too in that situation. But I always get a little nervous when someone is prescribed methotrexate shortly after diagnosis and they don't have lung symptoms.
Hang in there, hit us back and let us know how you are doing! Sorry you have the illness, but glad that you found us!
My name is Ashlee. I am 25 female. Diagnosed in December 2016.
I would say I agree with alot that's been said! However I thought I would kind of give you my two sense haha.
So for me.. I started out as a new nurse working nights. 6 months in I was extremely tired and pains( aching and tightness) I couldn't explain. I changed jobs to day shift. No change. Eventually I came to the MCTD diagnosis. I have never experience the debilitating pain that I could not get up but sometimes it is difficult. In the beginning I felt hopeless. So sad.. I didn't want to live my life in pain. So I put my foot down. Did all the research and trailing I could.
What works for me... exercise. Very regularly. I usually use 2 to 5 lb weight and work on strengthening most of my pain is neck and back. Also light cardio. Number one thing is diet. I try really hard to follow autoimmune paleo diet protocol. Once I followed to a T for almost a month and virtually felt no pain at all! That's when I was allowed to come off my plaquenil per my request. However sometimes I slip and really notice. Especially with gluten! I also take a vitamin daily and extra vitamin D. Hot Epsom salt ba th s with I'm especially aching after a gluten slip really help.
Sorry for the book. Just want to help!
If I could compare how I am doing now as opposed to when it all began.. Amazingly better.
I feel that diet and light exercise really I've saved me physically and mentally.
Let me know if you need someone to vent to or listen!
Welcome. I'm one of the few people who had a good experience with metrothoxate. But I took the pill and not the injection. I also stopped taking it after 3 months! Figured it had done it's job. I'm now on hydroxycholoroquine and 5mg prednisolone. That whole ten years thing scared me to until I realised I was only diagnosed after 7 years of symptoms and now 10 years later I'm still going strong. The pain is disconcerting. The loss of flexibility is frustrating. But you know what. I'm doing great. I work a full time job, I pay my own bills and I have good life.
Welcome and good luck
Really glad to hear from someone that had MTX work-- interesting that it was the oral form and you did the 90 day plan.
I often felt the same way about prednisone-- I wasn't on it forever, it did it's job, time to move on (though I was on prednisone for years-- they told me I would be taking it for life.)
Glad you are doing well and working, etc.
Allie