Pulmonary Sarcoidosis: How are you dealing with it?

I've had sarcoidosis since 2011. I am almost 65 years old. Mine has never spread to my lungs. However, CT has shown moderate amount in my chest. It feels as thought my chest cavity becomes squeezes. I have been to pulmonologist, internal med, rheumatologist, neurologist. Even made a trip to Rochester Mayo. I've had biopsy of node, mediastinoscopy with the thinking of Lymphoma. So far no mess work. Prednisone, methotrexate, Humira and Imnuran. About 4 years ago I woke up one morning deaf in my left ear. Seems to be nerve related. Two years ago I deleloped steroid induced glaucoma. I now have no vision in right eye and left is slowly declining. From that I can not take any steroids. Never had a spinal tap, don't know why. I have no energy, hot and cold, unstable on my feet. Also have Type 2 diabetes and neuropathy in legs. Take 2 pain pills and 4 Excedrin a day to get by. Read a little on a Nook or a tablet. Water my flowers and sit around a lot with a fleece throw year round. Started disability 2 years ago. No problem. No lawyer. On Medicare now. Have gone from 215 to 175 in this process without trying. Live in South so it can get hot/humid. Went to beach with family ( I can't drive) a month ago. Just sat in condo babysitting six month old.
All in all not a fun way to live and worsening. Get up at 7 hurting. Take Lotitab have coffee. Read tablet. By 9:00 back in bed till noon. Eat a lite lunch, take Excedrin and back to bed. Up about 3 shower/shave. Take another Loritab. Help wife a little with dinner.
Then water plants outside and take dog on a very short walk when I feel like it. Back in, bet PJs on and go to bed 8:30 with 2 Excedrin. May read some evenings.
Also forgot I get 12 eye drops a day for my eyes. Expensive little bottles!! That's about it. Any ideas?

Hi Ricky S, thanks for sharing your ALL TOO FAMILIAR experiences. At times I thought you were talking about me! I am gonna turn 64 in 3 weeks (god willing). I too live in the South (Florida, Brevard Cty). Was diagnosed ~10 yrs ago and it wasn't too hard getting SSI ability primarily because at the time I was a good candidate for a lung transplant. It started in my lungs and has been getting progressively worse and worse over the years. I describe the pain as like being tackled by the entire Dallas Cowboys (boo) defense. Heat and humidity is absolutely murderous on my lungs. I more or less have to hibernate in the summer when we're not up in New England. Thank goodness we were able to purchase a summer home up in Western Mass several years ago (Berkshire Mountains) where I met my wife to get away from heat for a while. Just got back, was a great break, it was very cool in the morning. How cool was it you ask?!; So cool had to start a fire in the fireplace every morning to take the chill out of the air. Gonna return hopeful;ly in a few weeks after getting more Dr appointments out of the way. My prostate cancer appears to be spreading but don't believe it's related to the sarcoid. May have to start radiation treatment but that's no big deal either.

I've found hydrocodone a very very effective pain reliever but am anxiously awaiting my medical marajuana card (non-smokeable and without THC type) to see how effective it might be for pain management and to get off script pain meds. I'll keep you posted if interested.

No hearing problems thus far but have been legally blind in right eye for some time now left one still good knock on wood. Only other complications have been minor joint pain and skin problems no big deal. Am in the process of making another appointment with Mayo in Jacksonville to see if it's starting spread to my brain. (nuerosarcoidosis). Pretty sure it has. Do you know anything about nuerosarcoid?

Thanks for the info about steroid induced glaucoma. I'm gonna talk to my pulmonologist about it at my upcoming appointment with him. I sure hope ocan stay on it.

p.s. hang in there a please stay in touch.

Sorry if I already asked you this Tammi, but, what were his symptoms, how was he diagnosed (spinal tap?), and how is his neurosarcoid being treated currently?

@bboxer Just wanted to let you know, as others have too, that you aren't alone. I was diagnosed with sarcoidosis about 32 yrs ago, in my 30's.
I understand it can effect different areas of the body, for me it's my lungs, back, and I have other issues but not sure if related. Tests show that I don't have anything active at this time. But through the years when I have felt the symptoms coming on it has usually been when I am under more stress than usual, so I try to stay away from stressful situations that I feel may bring on an episode. I hope that you can get some relief for your symptoms, especially your rib cage pain, I too have that fairly often and know that it can be very painful and debilitating at times. I'm currently taking an anti-inflammatory medication and that is helping. I do a lot of coloring, writing, mindfulness activities, and breathing exercises to deal with my anxiety and those things help me with the stress and help me through the rough times. Take care and I hope you get some relief soon.

Hi, I was diagnosed 14 years ago. Lungs, parotid glands. I couldn't walk and could barely feed myself. Along with steroids, and other medications I can no longer remember, I began a green tea and lemon regiment. Not recommending this ---I ceased all medication I was prescribed. I continued the green tea and lemon regiment. To my doctors' surprise, my lungs were like a new born baby's, after receipt of my lung X-ray. Other test confirmed. I was in remission. No evidence in 11 years of sarcoid in my body. Begin the green tea, lemon and honey regiment. The regiment will begin attacking the nodules. You will begin feeling better.

Hi @tine, welcome to Connect.
What great news that tests show that the sarcoidosis is in remission. You must be so relieved. I might, however, caution attributing the remission to drinking green team, lemon and honey. There's no cure for sarcoidosis, but in half of cases it goes away on its own. (http://www.mayoclinic.org/diseases-conditions/sarcoidosis/diagnosis-treatment/treatment/txc-20177973) Further study on a large population would be required to draw the conclusion that the green tea caused the remission.

I always like to refer to the National Center for Complementary and Integrative Health (NCCIH) for current information about the studies of complementary treatments. Here, for example, is information about green tea https://nccih.nih.gov/health/greentea

Tine, how long have you been in remission? Do you continue to be monitored with regular chest X-rays and exams of the eyes, skin and any other organ involved?

Want to know more about lung sarcoidosis

Thanks for your post I'm assuming my S is inactive as it was discovered in a CT scan following a bad car accident. In lungs but no symptoms, I do have numerous painful nodes in various places and wondering if others have them and how they handle the pain

Hi all,
I invite you to join me in welcoming our newest members to the sarcoidosis group. Welcome @pegh @hannibal @ejackson and @magspierce

- Magspierce: I love the way you always offer helpful coping mechanisms and approaches in your posts. How are you doing today?

- Peg: Did you see Magspierce post here about how she manages the pain? https://connect.mayoclinic.org/comment/70591/bookmark/?ajax_hook=action&_wpnonce=389abffcd1

- Hannibal: What symptoms if any do you have?

- EJackson: were you just recently diagnosed? What question do you have for the other members of the community?

@bboxer @rickys @chesneydell1965 @jodyvicaro @clay1969 How are you doing?

I have Pulmonary Sarcoidosis, was diagnosed in 2015. Since then I have painful headaches and it has spread to my skin. If I walk I wheeze and cough. I am scheduled for more MRIs (brain, neck and spinal cord) and a MRA (brain arteries and blood vessels) to determine what's causing my headaches and if this does not yield any information I may be getting a spinal tap to see if I have too much fluid in my head causing the headaches. I hurt all over my stomach is sore from coughing and it hurt to go to the bathroom. If I take a deep breathe my ribs hurt. I do not have any prognosis and I am still confused as to what is happening to me. Everyone tells me it is just a little Sarcoid nothing to be alarmed about. I have taken methotrexate, prednisone, and azathioprine. Nothing has seemed to work other than to make me feel worse or to give me diabetes and hypertension. I find myself searching for answers everyday. Sorry I could not help you.