Sarcoidosis Support Group

Sarcoidosis is an immune system disorder characterised by non-necrotising granulomas (small inflammatory nodules). Virtually any organ can be affected, however, granulomas most often appear in the lungs or the lymph nodes. Symptoms can occasionally appear suddenly but more often than not appear gradually.

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Lungs & Respiration
/ Sarcoidosis Support Group

newly diagnosis

sunnybrook1969
sunnybrook1969
I want to say Hi to all my fellow Warriors! Apparently I have had this for awhile and the doctors have ignored my pleas for help and have just listed me as having fibromyalgia. Well June 3rd I was hospitalized because my kidneys were in renal failure. My blood calcium level was high, and all kidney functions were high. They were working only 20 % and was sent home 10 days later and they were working only 50%. I was sent home with no treatment plan, The doctors didn't want to treat me without knowing what was really wrong. They thought I had sarcoidosis but they had to do the step by step. So I had the bronchial scope while I was in the hospital and it did locate a granuloma in the fluid but was not enough to confirm so I had to have them do surgery and go behind my breast bone and grab two lymph nodes. I was confirmed on July 4th. I am excited to have a diagnosis, but not so sure I am excited to what it is. I have read lots on the disease but I still am sitting in the dark on what I need to do exactly to take care of it. I am on methatreaxte and predinisone, but coming down off the prednisone. I have been going out and doing my normal stuff and I have already had a swollen lymph node in my neck area, and now I am on an antibiotic. My question is are we not to go out in public? Should we were a mask? What am I suppose to be looking for? What should I be doing? I live in Northern Ky and there is no support groups in this area that I have found and there is someone that I have located that has sarcoid and I am not getting much information except push yourself. I do push my self all the time. but I have other ailments that keep me from doing hiking and that sort of thing. Any recommendations would be truly appreciated. I am very frustrated and confused on all of this with it being new. Thank you in advance
sonnycamehome
sonnycamehome
Hi SunnyBrook,

Welcome to the Group : )

I'm sorry you've been diagnosed with Sarcoidosis. It sure can be confusing at first! There is a lot to learn. One thing you will learn is that everyone is different. Some people have problems with skin or lungs or eyes. Sarcoidosis can attack any organ at anytime, but it can also go into remission at anytime, so there is always hope.

I don't really find it necessary to wear a mask, but here are some of the things I do to try to stay healthy. I stay well hydrated so I drink lots of fluids, I don't stay out in the heat for long periods of time..lots of us have noticed that the heat makes us feel sick...I try to get enough sleep every night, and I pace myself with my every day activities. I don't push myself too hard because if I over do it, that sometimes causes a flare up, so I try to balance all the things I need to do evenly throughout the week. This just requires good planning.

I hope that helps a little!

I'm so glad you found this group! Please keep posting and let us know how you are doing. It's nice to have you here!

Best,
Sonny
danielroden
danielroden
Hello from Texas, I'm sorry as well to hear of your diagnosis. I have had Sarc for at least 6 years, and I just found out in /may myself. My lungs and lymph nodes are covered in Focile Granulomas with a diagnosis of Sarcoidosis and chronic inflammation of the lungs and lymph nodes, I have felt very fatigued for the last 4 years at least, and I thought I was just getting older and lazy. I knew something was going on though. I had a CT scan on my lungs in May, and that's when I found out. For me, I never know how I'm going to feel day to day. Iv'e been taking prednisone for three months, but I still am having a very tough time being in the heat, especially on sunny days. Typically on cloudy days, I can mow yards all day long. However this morning was not good at all and it was very cloudy. I can't hardly go outside when it is hot and the sun is shining. Just walking from my truck in the parking lot to the doors of the grocery store can sometimes make me almost pass out. The other aspect that I have had trouble with is getting my friends and family to understand that going outside into the sun is so devastating to me. My wife doesn't truly understand how horrible it makes me feel and that it is not helping me go into remission at all by being outside in the heat. I never thought that there was a disease that could keep you inside during the summer months, but that is where I would like to be every day. The sun produces vitamin D in the skin, and Sarcoidosis feeds off of vitamin d so it has been been concluded that staying out of the sun for most Sarcys is the best course of action, although some people with sarc say that they have to go out into the sun to make them feel better. Like Sonny says, it is different for every individual. This group has helped me a lot as well as the Inspire website. I try to gain as much knowledge about the disease as possible, but apparently, doctors know about as much as I do. They are not even sure where we caught the disease or if it is purely genetic or much of anything at all really. It is a very confusing disease, but I pray that things will get better for all of us. Keep us informed on your progress and procedures and God bless!