Pulmonary Sarcoidosis: How are you dealing with it?

My husband has horrible GI and swallowing issues from scarring from the sarcoid. He has one collapsed lobe in his left lung. It is around his heart as well. I never knew what sarcoid was until my husband was diagnosed with it. Our neighbor had it far worse (yep, our neighbor) as it affected so many organ systems for him. He was on prednisone for over a year and needed psychiatric help to deal with it all. And he was way younger than my husband. I am so glad you are able to walk so much. That’s problematic for my husband because breathing is so very hard for him most days. The doctor has discussed his having a lung transplant, but he’s almost 73. Good luck to you! (Irene)

Thanks Irene.

Thx for sharing. It’s recently sarcoidosis is affecting my heart and extremely low oxygen level. I’m advised I need to use a oxygen tank. I find keeping my weight down helps, I don’t feel the shortness of breath but hard to do when I’m taking 30 mg prednisone. I’m told to make an appointment at mayo for future Lung transplant, I’m 53 years young!:)

I’m not experiencing the pain in or around rib cage but severe shortness of breath which requires me to use an oxygen tank. Prednisone seems to be the only thing that helps in reducing inflammation and lower chance of getting more scare tissue. I believe I had sarcoidosis since 2009 but was diagnosed in September 2015 it’s progressively harder to breathe and I’m waiting for an appointment to qualify for lung transplant.

Thx for sharing

The high dosage of prednisone is temporary at 30 mg by the fourth week it will be 5 mg daily, it should be lowered gradually because it’s a steroid . Long term causes diabetes and weight gain

I forgot to pass on some more information that was recommended to me for a natural way to help with inflammation. Taking Turmeric and Bromelain daily are supposed to be helpful. I have been taking both for a month or so and can’t really say that I’ve noticed anything. I’m not recommending but you might want to read up on them and decide for yourself. I researched and couldn’t find anything wrong with taking them. Good luck to all and keep the information coming. Rod

I've had sarcoid for 30 years I am 50 now it has spreaded to my eyes,skin,bones,heart, kidneys and it started in my liver

Hello @kindltmdar1, welcome to Connect. You certainly have a lot going on and have seen a lot of specialists without any of them coming up with a treatment plan. I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

Here is a Mayo Clinic page that provides more information cirrhosis:
-- https://www.mayoclinic.org/diseases-conditions/cirrhosis/diagnosis-treatment/drc-20351492

@kindltmdar1 are you able to have your primary care doctor refer you to Mayo Clinic?

John

@kindtmdar1 Hi! I’m glad that you’re reaching out and looking for answers! You do have many issues going on. If I were you, I would get a second opinion at the least, or if at all possible get to a Mayo Clinic. I say that because they have what they need as a team. What I have experienced so far is they are thorough and get to the bottom of the problem with solutions. Get all the information you can from reliable sources on the internet on your condition to be educated on your conditions. It can get very overwhelming to feel hopeless. I don’t know if your on oxygen for your sarcoidosis or not. Don’t give up whatever you do. You need to stay strong and fight to get better answers. Good Luck in 2019.