Pulmonary Sarcoidosis: How are you dealing with it?

Hi, my name is Nancy. I was informed yesterday that the tumors on my lungs are increasing, yet my breathing tests are better than they have seen? My doctor is puzzled. They did a ton of blood work and want me to start medication treatment, which has horrible side affects. I have no energy. Hard to work. Can anyone relate?

Hi @nancylungdiseas and welcome to Connect! I moved your post to this existing sarcoidosis discussion so that you can connect with other members who have this condition. Simply click VIEW & REPLY in the email and you can read through past posts.

You may also wish to see these discussions:

– Sarcoidosis in the Autoimmune Diseases group http://mayocl.in/2ixthUD
- Sarcoidosis https://connect.mayoclinic.org/discussion/sarcoidosis/

Having your breathing tests get better but the tumors getting larger must be both confusing and scary.

I'd like to bring @chesneydell1965 @bboxer @rickys @magspierce @ryman and @yturner into this discussion, as have some experience with sarcoidosis and can empathize with the apprehension about starting a new medication, the battery of tests and lack of energy.

Nancylungdiseas, what are some of the side effects that concern you the most of this potential medication treatment?

I was told of vomiting, diarrhea and dehydration. I am tired all the time, which is difficult for me. I am usually a ball of fire. I weigh more than I have in thirty years. I get short of breath so easy. I support myself and concerned about paying my bills.

Hi, diagnosed with sarcoidosis 2 years ago. I'm doing ok..for the most part. However, I'm losing weight. Is there anyone experiencing this problem?

I was also diagnosed about two hrs ago. I have a lot of fatigue and I have gained weight. Just missed the last two days of work. I also have Fibromyalgia, which causes a lot of fatigue. My appt Tuesday I was informed that I might be starting medication tx, which comes with nasty intestinal side affects.

Hi, I’ve been recently diagnosed with sarcoidosis in the lungs and thoracic cavity. I am 49 years old and have a constant cough. I’m just looking for anyone else out there for some insight. Thanks, Rod

Welcome to Connect, @rod0852. You'll notice that I moved your post to this existing sarcoidosis discussion. I did this so that you can connect with other members talking about this condition. Simply click VIEW & REPLY in the email to read through past posts.

You may also wish to see these discussions:

– Sarcoidosis in the Autoimmune Diseases group http://mayocl.in/2ixthUD
– Sarcoidosis https://connect.mayoclinic.org/discussion/sarcoidosis/

@rtown789 @nancylungdiseas and @yturner also recently joined this group and are looking to connect with others living with sarcoidosis of the lungs.

Rod, you mention that you have a constant cough. Some of the other members have talked debilitating fatigue and shortness of breath. Are you also experience low levels of energy and fatigue?

Yes on both, and some heart issues as well. I still work and walk 3 miles a day when I have time. I guess my biggest question for the group is when do you know when to get on steroids again? I feel drained and week most of the time. There is no one factor that says it’s flaring up. Thanks Colleen

@rod0852 My husband with sarcoid goes on steroids when his pulmonologist tells him. You sound like you could use them about now. My husband doesn’t get lots of side effects from them - except feeling better! I wish he could be on them all the time.

Thank you Irene. I understand what you are saying. However, my Dr. told me to just come back when I think it’s worse. Honestly only a CT would tell. It really didn’t ever get better and I’m not sure that the coughing isn’t causing some digestive issues now with acid reflux type symptoms (which mimic heart issues). Frustrating. I know every case is different. I’ll just have to keep plugging along. I’m glad your husband is doing good or at least ok with it.