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...
Hi. I'm new to the rheumatology world. I had a positive ANA and elevated titer over 20 years ago and never followed up with a rheumatologist after having fluid drained from my knee. My blood work was recently positive ANA 1:80, homogeneous. I was referred to a rheumatologist who ran further blood work. Second blood result was positive ANA 1:80, homogeneous/speckled and positive RNP. Followup appointment today. Rheumatologist said that your lab did not give me the RNP numbers, just a positive. You don't have any markers for Lupus. Followup in 4 months and that she has prescribed a low dose antidepressant for my "algia" and said she suspects it's hormonal. Rheumatologist did not wish to repeat the blood test to find out the numbers for my positive RNP. Basically, just going to ignore it and follow up in 4 months.
History and symptoms: 56 year old female in menopause. I am a kidney donor, only have one kidney, so it is important to me to keep my remaining kidney healthy. Severe night sweats, intermittent pain and swelling in knees. Also intermittent pain in all joints, mostly knees, hips, feet and back. History of back problems and arthritis in back. Bunions and extreme pain in feet when walking (worse when I get up). History of severe cold hands and feet. Chronic dry mouth, dry eyes, problems swallowing, swollen larynx (ENT said due to reflux). I have strange patches of skin sensitivity that lasts a couple of days, where it is mildly painful to touch. History of being anemic. Severe insomnia and anxiety attacks. Fatigue, apathy, lack of appetite and lack of energy.
I hate going to doctors and this is why I never followed up 20 years ago. Now, that I have unexplained symptoms, I'd like to figure out what's going on. I have a card for medical marijuana for chronic pain. I believe my doctor is not taking me serious due to this.
My research indicates possible MCTD with positive RNP and positive ANA. My rheumatologisst didn't event mention MCTD, only that I didn't appear to have the markers and was too old for a diagnosis of Lupus. She was very was short, and didn't seem interested in repeating the blood work to get the "numbers" for the positive RNP. Didn't seem interested in going over my symptoms or working toward a diagnosis.
Thank you in advance.
The rheumatologist and/or your other doctors are correct in that the numbers for your ant-RNP are not important for diagnostic purposes-- it's either positive or it's not. (I happened to find out that my anti-RNP are very, very high, but my symptoms are relatively mild.)
I do not believe ANA has much to do with MCTD; mine has occasionally been positive. It was negative when I had blood clots and pericarditis, however-- I think-- or has been negative most of the time. I think it was positive for a few weeks when I was first diagnosed (incorrectly) with lupus.
The fact that you have symptoms in a time of hormonal change tends to suggest MCTD to me. Many of us have severe symptoms at adolescence, childbirth, menopause, andropause... I had no symptoms of andropause, but I notice that I had my blood clots at 55. This is purely an anecdotal observation based on reading zillions of posts here-- no one has done any research on it and probably never will, there's no money in it.
You do not mention being depressed. The fact that you have been prescribed an antidepressant is, in my opinion (as a patient, not a therapist), completely irresponsible if it is an SSRI or SNRI. These are just terrible drugs, and I've seen very, very few good outcomes. OTOH, if you're on an older antidepressant-- a tricyclic or an MAOI inhibitor-- it's more likely to be harmless, just keep a close eye on drug interactions. Be sure not to discontinue them without consulting your doctor, because some people have terrible problems stopping them-- others seem to have little difficulty.
As for cannabis, I do not use raw cannabis in any form, or smoke or vape anything. I do take very expensive, high-grade CBD oil in capsule form (occasionally a spray) with varying amounts of THC. I never go above 7.5 milligrams of THC per dose... I do not mind a very mild threshold THC effect if I'm watching a movie on TV or hanging out with friends, but I can't stand even that much if I have something to do-- it makes me think too much. And it is possible to fixate on some symptoms if you're actually getting high from cannabis. I stopped drinking and smoking weed four years ago, and I felt GREAT for about nine months... then I started feeling worse... right about the time the cannabis was out of my system.
I am certain that the CBD oil (with a little THC for the entourage effect) has been very, very helpful with muscle pain and stiffness. Before I started it, I was really losing my ability to do sports... now I'm kind of back to where I was at 55. I can ski, bodyboard and scuba dive occasionally for short periods of time and still really enjoy it-- two or three years ago, I was just losing power particularly for swimming. Most importantly, I can still do 20-minute moderate aerobic workouts, which help my mood a great deal.
Hope that is helpful!
Mary Ann