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'm new to this group and I have Mixed Connective Tissue Disease, Rheumatoid Arthritis, Kidney Disease 3 and Migraine Headaches among other things. I have had this disease at least six years but maybe longer. Only the past two years have my doctor's taken interest and have tried me on a couple of medications. Most recently I was put on CellCept but you have to go off if you come down with any sort of infection and UTI's have plagued me (5) within the past year (going to see a Urologist). I was on Orencia infusions for awhile but the doctor didn't think they were of much good. When I'm in a lot of pain Prednisone 5 - 10 mg. is prescribed. It seemed so suddenly that I was stricken with MCTD and it has taken me down hill rapidly. My doctor is not much help in giving me information and I'm researching the net to try and find out what is ahead for me. I'm much better off when I know what I'm dealing with. Any information from those that are dealing with this disease would be very helpful. Yes, most of my friend's are no longer around (they don't like sickness) but some new ones have surfaced and I try to stay as positive as possible, but more information would certainly help. I would like to have a support group near me that I could attend and meet people who have this same condition but I haven't found one so far. Thanks for listening and I hope to hear from you.
Support Groups: Every three to six months, I troll around, see if I can find one online that's better maintained than this one, that maybe we could merge with-- the people here are great, but the website was recently restructured in a way that makes it MUCH harder to read posts or search them. But I haven't found any, and other options others have found didn't pan out. There's another one on Facebook, but not all of us use Facebook. As near as I can tell, this is it-- this is the biggest one. We're it. You're here.
As for face-to-face groups, long have I dreamed of such a thing! Back when we first started, when dinosaurs roamed the earth (2005 or 2006 or whatever) we sometimes talked about arranging a face-to-face meet up. Of course, it turned out we were almost perfectly evenly distributed throughout the world-- one in England, one in Germany, one in the midwest USA, and so on-- so that's made it very hard. But it's a GOOD idea, so let's open that up again. I'm in Southern California, so if that's convenient for anyone, I am totally open to scheduling a meeting. Even if only three of us were there, it would be worth doing! My wife and I do go to Florida periodically-- if there's a group of us that wants to meet there, we might even stop in with enough advance notice and if the timing was right.
So you are 80 and symptoms presented in your early 70s, maybe earlier? It is awesome to meet you. I am one of the oldest in this group at 59; I was diagnosed at about 16. MToennis is a few years older or younger than me, I always forget. OldHoosier might be in his 70s. There's a lot we could learn from you and vice versa.
BUT this presents with an interesting dilemma, because we don't have anyone who got the illness at around your age. The real Cliff Notes version of my best guess would be: This thing may really try to kick your ass for the first couple of years, as it does for most of us by the time we notice it.
The immunosuppressants, I would think, you would have to be really cautious with. The good news is, you're only on one of them, and your team seems to be on the ball with the side effects. Prednisone will have some of the same side effects-- blows a hole in your immune system you could drive a truck through-- but you don't have to take it every day. Dose sounds about right; hope they switch you to every other day dosing after a few days, because that makes it easier if you have to go on and off it, but take it exactly the way they tell you to. If they tell you to taper it off after each course of treatment, definitely do exactly what they say.
Personally? I think everyone who has this illness should be on an opioid, if you don't have a history of substance abuse. I'm sure that opioids (daily since I was about 50) are one of the main reasons that I stayed as healthy as I have for 45 years or whatever. But in some ways, it's the same strategy as prednisone-- go after the symptoms, stay reasonably comfortable physically-- like, within 50-70% of normal, stay physically and mentally active, and you kind of fool your body into thinking it doesn't have the disease. I think that's the best way to force a remission or stabilize symptoms.
The other route is immunosuppressants -- plaquenil, methotrexate, etc.-- and my own personal feeling is, you have to do that if you have serious lung involvement, but they are best avoided if you don't. I think this makes an odd kind of sense, too-- if your immune system is way out of whack, the methotrexate will go after the part that's most out of whack, and won't screw up the rest of your immune system too bad. But if your symptoms aren't that bad, the methotrexate is more likely to take out immune function you need.
I am totally making this up, by the way, based on general anecdotal reports I've been reading here for 15 years or whatever.
And unfortunately, that's sort of what we have to do, because this is a rare illness, and there's no profit incentive for researching it. There are a few good articles out there. I have one post listed here called "Telling Good Research From Bad" or something like that... hunt around for it, I think it has a couple of links. If your doctor isn't telling you much, it's not because he thinks you're going to die, it's because no one really knows much, they're kind of embarrassed about that, and don't really want to admit it. So rheumatologists will say all kinds of crazy stuff.
Generally, if you can avoid the lung problems, this illness is going to be scary, it's going to be a pain in the ass, it will take your life and shake it up in ways you can't even imagine, BUT.... look at how long a lot of us have lived! And pretty good lives, too. I can still do a lot of stuff at 60-- very challenging, but very short ski trips (two or three days, four hours max) body boarding (20 minutes, working up to 40 by the fall), playing guitar live (only three or four songs at most).
I also spend about one to two and a half hours every day lying flat on my back doing nothing. And I've learned not to worry about it. And I'm really bonded with my dogs!
Okay, hope that's helpful... and hopeful! Please post back with your symptoms, struggles, complaints, victories, etc. Welcome again!
Mary Ann
I saw my Internist yesterday and found out the results of my bone density test: I have Osteoporosis of the wrists and the count is like 4 1/2 about the worst it can be so I have another thing to add to my list of things NOT TO HAVE. The edema that I have in feet, legs, and hands is what is causing all the intense itching under the skin. Especially during the night and it feels like somewhat small bumps under there. So far, the lungs are clear but something may be going on in my stomach. It always feels sick and is quite bloated. I will be having an upper and lower GI the end of next month. My Internist told me: Of all my patients, you are the strongest and if anyone can make it through this you can. Believe me, fate brought me to her. She is the perfect doctor for me and will go the whole nine yards to help me in any way she can. I can call or email her at any time and she will have the answer to my question, will point me in the right direction or get it for me. I saw my new Gastroenterologist on Monday and liked him so much. He really perked up when I told him that I had MCTD and said he is very familiar with it. Immediately, I wanted to pick his brain but will wait a little while. I have had repeated UTI's so will be seeing a new Neurologist next week and, somehow, feel that it is connected.
I keep as active as I can but my spine is fused and I have two titanium rods in there so, many activities are limited but walking is fine. I just have to be very careful not to fall and injure my wrists and a big dilemma is not falling because I can't get up unless I can find something to hang onto or someone to help me up. I am a people person and love to speak. I'm writing a book although my grammar can get in my way at times, plus I love anything along the artistic line.
Wonder if I should get a medal for being the oldest in our support group. I always did things backward it seems so it doesn't surprise me.
MToennis, I'm so glad that you jumped in here and I want you to tell me a little bit about yourself. Do either of you belong to Facebook? I'm there and you can take a look at my picture and other stuff. Let me know. I have so much more to say but I'll spread it out a little here-and-there, and I want you to remember that I am here for you if you need any help that I can provide. I know that I have run into a few days that the tears fell and I just wanted someone to understand why I felt the way that I did. I'm fortunate to have a supportive husband although sometimes I feel that he would prefer that I didn't have all this crap. Take care and be safe and again -- I'm here.
Pat Molter
So nice to hear back. I am retired now at 64. As for the disease, I have had strange things since I was a baby. I was in the hospital for glomarulonephritis at 15 months caused by a reaction to streph throat. My body had an immune reaction to my kidneys. Later on I developed strange blisters on my toes several times. The Dr did not know what to make of it. Then photosensitivity. All my school pics have me crying and squinting in them. I spent a lot of time in the house and under a huge maple tree we had in our yard! In my teen years, I was pretty healthy. As I got older, I would have periods of pain and fatigue which would last a little while and go away, but I always slept a lot. I chalked that up to being a nurse with a physically demanding job. Over the years, I married and had 4 children. I first went to a rheumatologist in my early 30s who could not diagnose my problem because I went into remission, but he was sure I had some kind of autoimmune disease. At 53 it all fell apart and I was finally diagnosed and started treatment. I am currently supposed to be in remission. Off all meds, and I cannot move. The pain and arthritis is getting really bad. My feet are swelling as well as my hands. I drop hair with every step and I am sleeping 12 hours a day. Guess the party is over, but the labs are currently good so, of course, I must be OK. Sigh.... I have had UTIs also but found a great urologist. I had a deep seated infection which was diagnosed with a bladder scraping. I got some shots of gentomyacine and feel much better. I am taking probiotics and a daily macrodantin pill as a prevention. I also drink a lot of water as well and it is working. I have gone a year with no infection and that is a record! So nice to hear from you.
Mary Ann
Mary Ann
Pat