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Mon, Mar 18 11:48am · Polymyalgia rheumatica in Autoimmune Diseases

I have symptoms return when I go below 10mg of prednisone. I drank wine just about every night when I was taking prednisone. A glass (or 2) helped me to relax. I also don't do well with pain pills. They made my stomach hurt or made me nauseas. I agree if you can get in with Mayo Jax, they are great. I have a fabulous rheymatologist and cardiologist there.

Sun, Feb 17 8:59am · Polymyalgia rheumatica in Autoimmune Diseases

Unfortunately, I had an allergic reaction to plaquenil when I tried it years ago. My feet and hands peeled terribly. My skin would just peel off. I hope it works for you, because I know how toxic prednisone can be.

Nov 5, 2018 · Lupus or not Lupus? in Autoimmune Diseases

I struggled with a diagnosis, too, until I was told (and it makes sense to me now) that it doesn't matter which auto-immune disease I have….all they can do is treat the symptoms. I was told Lupus, then Sjogren's, polymyalgia rheumatica, myocarditis, fibromyalgia…on and on. Putting a name to it doesn't change it. No matter which auto-immune you have, the solution is the same….treat the symptoms. My symptoms have varied from alopecia, joint pain, muscle pain, psoriasis, terrible rashes, heart attacks, on and on. Each time I get symptoms, I get treated for the symptoms (it is usually prednisone, but I've also tried things like Humira and Embrol). We're all different, and what works for one person doesn't work for the masses. Good luck on your journey!

Sep 29, 2018 · Polymyalgia rheumatica in Autoimmune Diseases

I have the same diagnosis along with heart issues. I have the same thing happen to me when I go below 10mg of prednisone. I drink wine every night, 1 or 2 glasses. The pain in my hips and neck is unbearable at times.

Sep 14, 2018 · Low blood pressure in Heart & Blood Health

I think the 120/80 guideline is just that….a guideline. Mine is 80/50 or 90/60 on a regular basis. I have naturally low BP, and I'm on meds for my heart which make it even lower. I do monitor it regularly, and make sure that I get up slowly, etc. I think each of our bodies are different, and what is "normal" for you and me might not be normal for others.

Sep 8, 2018 · Lymphocytic Myocarditis in Heart & Blood Health

Mary, I'm happy to tell you what I know. My diagnosis was finally confirmed through a heart biopsy. I'm 57 years old. Since I was about 40, I've had some strange auto-immune type symptoms that come and go (strange rashes, alopecia, joint pain, extremely swollen joints, etc.). I saw various rheumatologists and dermatologists in Georgia, and was never really diagnosed with any specific disease. One thought Lupus, one thought Sjogrens, but no real diagnoses and treatment was usually steroids. In 2014, I experienced 2 heart attacks within 3 weeks of each other. Had the typical elevated troponins and damage to heart. But when the cardiologist went in to put a stint, he found absolutely no blocked arteries. Mine look great. He's stumped and put me on almost 2000 mg of aspirin a day. At that time, my EF was 50 (low end of normal). I felt better not long after those events, but about a year later (2015), I had bad chest pain again. This time I was diagnosed with heart failure. Again, a few days in the hospital and loads of steroids, and I'm good again. EF is 50. About a year later, just after relocating to the Jacksonville area, I have the chest pain again. Same scenario, but this time they tell me my EF is 25. I get a referral to Mayo and finally started getting some answers. Dr. Cooper (my cardiologist) is the leading authority on myocarditis, and has been a God-send to me. I end up spending 2 weeks in the Mayo hospital with Dr. Cooper and the transplant cardiologists. They did a heart biopsy as part of the transplant approval process, and it was confirmed as lymphocytic myocarditis (which I think basically means that it's myocarditis caused by an auto-immune disease). So the way I understand auto-immune diseases, it's basically your immune system attacking your own body because it thinks there's something wrong. In my case, my immune system attacks my heart and causes inflammation (myocarditis). They also did a heart cath through my neck to get a better EF reading, and it was 19. I guess technically, it doesn't matter which auto-immune disease it is, because you treat the symptoms as they occur. I wore a life vest for about 6 months. I was on the transplant list (status 2) for about 6 months, and on various drugs. I improved enough that they were able to remove me from the transplant list. My EF after a year was back up to 50. Yea!! But a few weeks ago, had the bad chest pain, absolutely no energy, everything was a struggle, etc. Back to the hospital. EF is down to 29 (it was 59 a month prior, so it fell fast). My BNP, which measures heart failure, was in the 300s the previous month, and was now in the mid 900s. SO….now I'm going back to transplant for another consultation, and we'll see where that leads. I'm praying not to need a transplant, but I do know that if I need one, I'm at the best place possible. That's basically what I know about lymphocytic myocarditis and my story. Please let me know if you have any questions. I'm always happy to share, especially if it can help someone.

Sep 8, 2018 · Lymphocytic Myocarditis in Heart & Blood Health

Hi everyone….I'm new to this group. I am looking for others that have Lymphocytic Myocarditis. Anyone out there have this disease?