Share Your Sarcoidosis Symptoms and Medication Experience

Hello, I have pulmonary Sarcoidosis and mediastinal & hyler lymph node involvement

Sarcoidosis is an INFLAMMATORY Immune System Disease. This means it causes inflammation and not deterioration in your body. The only thing AUTO Immune and INFLAMMATORY Immune diseases have in common is they both are a defective immune system. The AUTO Immune disease thinks your body itself is the bad guy and your immune system is attacking it...destroying your body in the process. The INFLAMMATORY Immune disease thinks an imaginary invader is trying to harm your body and it swarms to protect you. That swarming are the granulomas and also that swarming is the inflammation. The medical world treats both AUTO and INFLAMMATORY Immune diseases with immune suppressors in an attempt to slow our immune systems production and thereby reducing the deterioration and/or inflammation. The big difference with Sarc VS auto-immune diseases is with Sarc it is your NATURAL body defense to have a higher level of immunities being produced so when they try to suppress them, your body counters with producing even more! And when there is an even higher level running around fighting imaginary enemies, the inflammation increases. Then the doctors up the dosages and our body counters with upping immune levels. With AUTO Immune issues, the body doesn't do that. You suppress the immune levels and they stay suppressed...to the point even where they can't reproduce on their own any longer and when that happens, you have to be treated with medication to GIVE your body immunities, only to then take meds to reduce it. Drugs! They are horrible! My symptoms were all over the place and I was ignored and told I had mental issues for so long I almost believed them. Pain all over my body, feet swelling and purple, could barely walk, coughing, heart racing, rashes on my legs, fatigue, lack of interest in anything. After diagnosis, they gave me steroids to help with the inflammation in my body. It worked and ai tapered off. Gained 30+ pounds in 3 months. I have CHOSEN to not take medications since then. I've tried a variety of heart meds, none of which worked and so I now have a pacemaker/defibrillator due to the scarring created in my heart. I use Fluocinonide Ointment for the skin rashes (prescription only), and occasionally Meloxicam for inflammation. My PCP prescribed that for the chronic back pain I get due to degenerative disc disease and, you guessed it, inflammation I deal with. It is non-steroidal and non-narcotic. It's really a "Super Advil" in my mind. She wanted me to take it daily but I'm anti drugs so I only take it when the pain is at it's worst. Maybe twice a month... :).

My symptom was pain in my back/ right side when I took a deep breath.

I have been taking an immunosuppressant, Imuran, for Crohn’s Disease, and it has handled the sarcoidosis too, since they are both auto-immune diseases. So I get 2 for one!!!

Hi, I have lung and skin involvement. I take plaquenil.