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Posts (9)

Aug 5, 2019 · Cardiac Sarcoidosis in Autoimmune Diseases

Hi. I just read this thread. I found myself in a similar state. My cardiologists diagnosed cardiac sarcoidosis based on MRI results. For long and complicated reasons I sought another opinion at Mayo. Here’s the bottom line, NOT sarcoidosis after all. What was being interpreted was remnants of the contrast agent (Gadolinium) used for the MRI. A PET scan seemed more definitive. Have you had that procedure?

Jan 15, 2019 · Heart Rhythm Conditions – Welcome to the group in Heart Rhythm Conditions

@zollie thanks for your post it gives me hope. I am about to go through an ablation procedure and although my doctors are good they dont volunteer anything concerning what to expect. Similar to you i was (am) athletic. Blood Pressure fluctuates widely. Heart rate swings low to fast but usually for a reason. Noone called my condition afib. Mine is premature ventricular contractions. Thanks again for your post.

Jan 7, 2019 · Heart Rhythm Conditions – Welcome to the group in Heart Rhythm Conditions

@lalton , @johnpny thank you both. I seem to have lucked into a string of experienced cardiologists with good credentials. The PVCs were dramatic enough (number, effect) for them to skip quickly to ablation before more damage to the muscle occurs. I only wish I could blame it on being a high end athlete but I am not that rigorous. The docs did the monitor and are pretty sure of the general location of the aberrant cells so I’m hopeful. Thanks again.

Jan 6, 2019 · Heart Rhythm Conditions – Welcome to the group in Heart Rhythm Conditions

Hi my name is Tom. I’m a seventy year old white male. I have recently been diagnosed with PVCs. They came on like a thief in the night with the principal symptom being inability to draw breath (fluid in left lung). My PCP, refered me to a Pulmonologist who in turn sent me to a Cardiologist. ECG disclosed the PVCs. Echo cardiogram showed really bad efficiency. Cardiac MRI to look for damage (still waiting for interpretation), and ablation scheduled in two weeks. Currently taking metropololol and a diureticbut the condition is barely controlled. I would love to know a couple of things like: what did I do to cause these? I’ve always been a competitive or amateur swimmer and distance runner. Heart never had a problem before.

Nov 6, 2018 · GPA granulomatosis with polyangiitis in Autoimmune Diseases

I was diagnosed with GPA in 2007. I am currently 70 and live near Dallas
Texas. Initially I was diagnosed by a very good rheumatologist who started me on methotrexate while he referred me to a pulmonologist for blood in the lungs. I was also exhibiting blood in the urine and general weakness with coughing. The pulmonologist immediately hospitalized me for testing and substituted cytoxin and prednisone for the methotrexate (massive doses of each). I received a blood transfusion and when stabilized was released. It turns out the kidney damage also affected red blood cell production. For one year I received quarterly injections of Procrit to force RBC production until the kidneys recovered sufficiently. I stayed on cytoxin for a year when I was transitioned to 2 grams a day of Mycophenylate and 20mg per day of prednisone. Over the years my urologist has slowly decreased the dosage of each while monitoring, primarily my ANCA levels. The ANCA readings have been below detectable levels since release from the hospital. Currently I take 250 mg of Mycophenylate each day and 2.5 mg of prednisone every other day. In January I am going to cease taking the Mycophenylate and in 30 days have lab work done to check the ANCA levels. I have had no adverse reactions to any meds except some hair loss on the cytoxin (it later came back and somewhat darker). While on cytoxin I developed pneumocystis pneumonia (compromised bacterial immune system). That was nasty and I was on Smz/TMP for years, until the mycophenylate dosage was significantly reduced.

Aug 4, 2018 · GPA granulomatosis with polyangiitis in Autoimmune Diseases

I understand your weariness. Autoimmune diseases like this (and I believe we are talking about the same thing) are malicious. Question: are your kidneys involved? The term granulomatosis implies that they are. If so your exhaustion could be a result of a low red blood cell count. Oddly although red blood is generated in the bone marrow, it is the kidneys that control the production. When my condition was active all I wanted todo was sleep. A transfusion and some injections of Procrit were required until my kidneys recovered enough to do their job. My doctors needed a kidney biopsy along with the previously mentioned ANCA values to determine my specific autoimmune condition. Bottom line: the response to all these conditions seems to be the same, you take some drugs that slow the reproduction of the fastest reproducing cells, those being the immune system cells (leukocytes?). That’s why the drugs they use are, or are closely related to anti-cancer drugs (another fast reproducing cell). Methotrexate I believe is also used to treat cancer and is very possible. I’m not questioning your RA doctors diagnosis or treatment. I just saying what I’ve learned.

Aug 3, 2018 · GPA granulomatosis with polyangiitis in Autoimmune Diseases

Hi. I have, or had ( I stay on a low dose of medications to prevent recurrence; they are well tolerated) what used to be called Wagner’s Granulomatosis. I think they changed the name to Vasculitis with Polyangitis and that may be the same as your GPA. It is either controlled or in remission at this point. While being diagnosed my rheumatologist started me on Methotrexate but upon diagnosis it was changed to cyclophosphamide and massive prednisone. As the symptoms abated (primarily the immune response indicators ANCA assays) the dosages were reduced. After a year I did develop an opportunistic infection (pneumocystis pneumonia). That was cleared using Bactria. I stayed on a prophylactic dose of an antibiotic for years to prevent recurrence. I never developed menengitis. I don’t think viral menengitis will be a concern because the part of the immune system that responds to viral infections is not the part being suppressed (check) with your doctor. Bacterial menegitis would be a concern. Ultimately I was transitioned to Mycophenylate (2000mg/day) along with prednisone (20mg/day). As time progressed the amounts of both were decreased. I never developed the noxious side effects to methotrexate (lesions, nerve damage). John Bishop’s advice seems good. Have your physician investigate whether Mycophenylate or at worst Cyclophosphamide might be a better alternative.

Sep 26, 2017 · has anybody used epoetin alfa (Procrit) in Blood Cancers & Disorders

Hello all. I took Procrit for severe anemia resulting from autoimmune attack effecting my kidneys. This was approximately eleven years ago. I was on Procrit injections for the better part of a year at three month intervals. I had no side effects from the injections but the results were good. I have a note on my lab results written by nephrologist that said “better on Procrit” referring to my RBC. Naturally my insurance company questioned its usage and required additional justification.