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 haven't taken mtx, but I have been on prednisone. Does your dr think it could be a reaction to the meds?
I noticed yesterday....it was hot and really humid... that my hands and knees were swollen, much better today....less humidity. I find that any dampness makes it worse.
I hope you get some relief this illness seems to want to rob us of any fun....can't take the humidity or the air conditioning.....need that perfect temp to be comfortable.
Mary Ann
I have always been the type that you have to fight to take medicine. Now every Sunday I find myself counting out pills and refilling my weekly med box. Funny right?
If you want to talk just message me. I am always here.
My daughter also reacts to the weather. The rheumatologist beleives it is physics reaction to pressure in the atmosphere and how our fluid gels or circulates. My daughter has Sjrogrens and Rheumatoid Arth. along with a few others. Nights are the absolute worse for her condition. We have found that cold laser treatment works extremely well on the inflammation and better circulation. You may want to check it out. It allow us to drop her dose of steriods from 25 mg down to 10 in three months and are trying to get her down even further if not off completely since she is on methotrexate. The last mg is the hardest your body has a sweetspot for predinsone and coming down from 25, 10 was far easier then trying from 10 to 5 which we tried many times. But without the laser at least for my daughter is was the difference between walking on a daily basis when the steroids became basiscally ineffective for the level the pain and intensity of flareups to managing of inflammation she was experienceing.
Hope this info helps you all. God Bless!
well 8 ,Im sure theres worse. Maybe I can try to get some sleep the advil and tylenol have dulled the pain,My nephews wedding is on Sat ,Im going even if I have to crawl under a table and nap!!
Mixed connective tissue disease can be complied of many disorders. Which diagnois code do they use to describe your condition? The reason that I ask is that my daughter has Rheumatoid Arthritis, Sjrogrens and Raynauld looking for Crohns etc... There could be others as the progression of hers can trigger others if not placed under control as quickly as possible. She had swelling in the face and dry month no pain occassionaly. The Rheumatologist suggested that we see an ENT to test for Sjrogrens. A biopsy needs to be performed to be conclusive about some not all disease (autoimmune). Anyway, the biopsy confirmed what she thought to be true based on observation simular to htat of RA. Any way there were very few symptoms and not really the predominant one. Treatment is basically the same and responsive to various degrees of the medicines shared on this site. Do you have any neck pain as well. After her diagnosis more symptoms started to appear. So MCTD means something very different to my daughter every time we investigate new symptoms. Just knowing makes us aware of how aggressive we need to get in trying to get the global implication of the disease under control. MCTD is broad and you can start out with RA and expand to many others due to the triggering cabability of the disease itself. Please keep track try to rule out or confirm side effects from drugs if not press to get a clear understanding of what each symptom is related even though, again they treated with the same family of drugs.
I am new to this board (heck any message board :) so forgive my intensity. I do a lot of testing and documenting of my daughters condition and what she is resposive to, new symptoms and we are constantly brainstorming with her Rhemy (excellent dr!!!)
Always my very best (even though I am new) to you and all that read.
Dana a.k.a Mrs. Lady
* Welcome, Lady, glad to have you hear. I'm not sure what you mean by "a progressive case," as I have never heard that term used with this illness before. There are many people on this site who had hellacious symptoms as adolescents, went into partial remission in their 20s sometime, and then the illness came back with crazy (but slightly less dangerous) symptoms when they hit middle age, particularly if they had kids, went through menopause or premenopause or andropause, or had some other big hormonal change. (I am a guy, so my symptom profile tends to be milder overall.)
* That said, the sclero and lung symptoms seem to be the most potentially dangerous ones, and your daughter is lucky to have such a good advocate and caregiver!
* I was on 5-10 mg. of prednisone on alternate days from about age 16 to 28 or so, and it seems to have had no long-term ill effect on organ function. People are far more scared of this drug now than seems reasonable to me, particularly for young people. My personal layman's opinion is that this drug is less dangerous than advertised in lower dosage ranges for young people. (I am 52 now, in a fair amount of pain, but very active.)
* If you're having trouble tapering, ask your doctor about slowly transitioning to alternate day dosing. If you can get there, it is easier to taper and adjust, the adrenal gland does not get hammered as badly, etc.
* Auggie, the tightness in the face can be a lot of things. I don't have sclero, my ANA is good, my face is a normal color, but sometimes my face is on FIRE, particularly my forehead. I feel like I'm allergic to my own frickin' mustache. And you've probably heard me complaining about blepharitis before... that's eyelid inflamation, and it is a really bad and little-discussed side effect of some forms of this illness. Chemistry of tears may be way off, as well as chemistry of saliva, leading to a Sjorens-like thing (or full-on Sjorens) that is hell on your teeth.
Hope that's helpful... or something!
--Cat