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...
First off I would like to say I don't know if I believe a word these doctors say anymore.
My MCTD effects my Lungs, blood, blood vessels, muscles, ligaments,Skin and a constant battle against extreme inflammation. My Rhumy uses one number to determine my condition. Sed Rate, which my GP says is effected by a small infection like a boil, an ingrown toenail, sinus inflammation, Just any thing Simple. My sed rate numbers bounce up and down from 80 to 60 on the high end and 30 to 40 on the low. but that's checking it every 2 months.
My Cardiologist is confused about the cause of my Heart attack. Yes there was blockage ( blood clot) but very minimal plaque, no other note able blockage." But there was extreme fluid around the heart and in the lungs". He asked about my previous pneumonia and how quickly it came on. And in all cases I told him I felt unwell for normally 2 days before I was either being treated or hospitalized. He admits he is not familiar with MCTD but suggest my Rheumatologist needs to get control of the fluid and inflammation.
In response my rhumy cuts my methotextrate in half and restarts my twice monthly humeria, (which we stopped because due to problems getting my prescription filled and there was no difference without the drug)
I am not sure if anyone has experienced this type of event. Pneumonia and laundry list of other symptoms were all I had to fear. My heart function is normal now. Before the heart attack my weight was dropping regularly without dieting. Now I have to weigh daily to avoid fluid on the heart and lungs, with my weight now shifting up and down daily yet making no progress in weight loss, If i gain weight I take water pills basically until I dehydrate, urine turns dark and I stop them. Now I am fighting my second bout of pneumonia since march 18th. One fear is the cardiologist is giving me 3 blood pressure meds and my current bp stays below 100, like 95/60, my normal bp was around 118/60 to 123/65.
We are all going to be doctors ourselves before these guys figure out what to do!
My MCTD effects my Lungs, blood, blood vessels, muscles, ligaments,Skin and a constant battle against extreme inflammation. My Rhumy uses one number to determine my condition. Sed Rate, which my GP says is effected by a small infection like a boil, an ingrown toenail, sinus inflammation, Just any thing Simple. My sed rate numbers bounce up and down from 80 to 60 on the high end and 30 to 40 on the low. but that's checking it every 2 months.
My Cardiologist is confused about the cause of my Heart attack. Yes there was blockage ( blood clot) but very minimal plaque, no other note able blockage." But there was extreme fluid around the heart and in the lungs". He asked about my previous pneumonia and how quickly it came on. And in all cases I told him I felt unwell for normally 2 days before I was either being treated or hospitalized. He admits he is not familiar with MCTD but suggest my Rheumatologist needs to get control of the fluid and inflammation.
In response my rhumy cuts my methotextrate in half and restarts my twice monthly humeria, (which we stopped because due to problems getting my prescription filled and there was no difference without the drug)
I am not sure if anyone has experienced this type of event. Pneumonia and laundry list of other symptoms were all I had to fear. My heart function is normal now. Before the heart attack my weight was dropping regularly without dieting. Now I have to weigh daily to avoid fluid on the heart and lungs, with my weight now shifting up and down daily yet making no progress in weight loss, If i gain weight I take water pills basically until I dehydrate, urine turns dark and I stop them. Now I am fighting my second bout of pneumonia since march 18th. One fear is the cardiologist is giving me 3 blood pressure meds and my current bp stays below 100, like 95/60, my normal bp was around 118/60 to 123/65.
We are all going to be doctors ourselves before these guys figure out what to do!
Reason being, chronic inflammation puts autoimmune patients at higher risk for cardiac disease.
How many rheumatologists have you seen?
If you pm me your zip code, I can peruse my insurance company's website. They rate physicians based on their rate of successful treatment combined with the speed of diagnosis.
While it isn't a sure fire answer, it helps.
I am so sorry to hear that you are going through this on top of everything else.
I had joined the MCTD group when my dx was still in the air. And while I don't have anything as definitive as RA, I'm close than I was.
Still miserable.
The fluctuation in weight means your heart is still not as strong as it needs to be or you are having kidney issues. Stay off salt and sodium. It will help.
As for the pneumonia, you might need to see a pulmologist. The other issue is your immune system is probably compromised because of the MCTD treatment! There is a thread about immunoglobulin on here right now. Ask the rheumy about this.
The weight you want to lose is another matter. just do what you can do diet and exercise wise. It is a struggle I also face. I pulled another back muscle again today and will be down for another week. Sigh. So depressing.
Oh, the cardiologists love low blood pressure. If it is not below 90/50 and you are not falling down from dizziness, they are happy. Hope you feel better soon.
Mary Ann
I've experienced my Rheumy going strictly by my SED RATE too and yet I'm at my all time worse and NOW my SED rate went down! Go figure!
Are they POSITIVE it was a heart attack & not inflammation of the pericardial sac surrounding the heart?
I experience chest pain so often that I've learned to ignore it bc I'm on 42 & thus I have always thought I was too young .. But u are making me re-think this!
Re: low BP - as long as your not experiencing any severe lightheadedness or passing out.. U should be fine!
I also believe that while 120/80 is supposedly the "ideal # for BP" we are ALL different & for example for ME that is WAY TOO HIGH! In fact, my Ob/gyn MISSED that I actually had Preeclampsia at the end of my pregnancy bc he kept saying that 136/86 was OK for me but IT WASN'T!! My normal BP is super low - at @ 90/58!! Hello - that's a DRASTIC difference!! We need to be treated "individually" and I do believe this is the direction medicine is going in ... But we are not there yet! In the meantime, we with MCTD are the "lost disease" and we fall between the cracks! I have gone thru the litany of meds - none being successful & several (methotrexate and a few others - can't remember the names - total "fuzz brain"!!) caused severe liver dysfunction and ALMOST liver failure!