Sarcoid

I was just diagnosed with sarcoid and if ne one has ne information as to what i should do and not do pls let me know since i am a bit worried bout my life style and how i should go about the right way in making sure this disease doesn't worsen or affect my daily activities and work.

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Hi sorry to hear about your Sarcoid, it depends where you have been affected. But i will explain my situation, it is mostly common in the lungs, i have also had it in the sinus's and i took cortisone spray and saline spray for over a year and eventually i started to breath through my nose again and my taste buds came back but it took nearly 2 years, i still flush my nose with saline water so i can breath easier every day. when i had sarcoid in the lungs my Dr prescribed Prednisalone or cortisone tablets of 25mg and i put on 20kg in 2 months, that was the most devastating thing to happen and i wasn't able to lose the weight for years, i still have weight issues and its been 8 years. I also have sarcoid on my skin, on my arms it has scarred and it looks like bruising. I have been struggling with sarcoid for 12 years now but i feel i am slowly getting better, i dont have so much unexplained pain in my body as much as before. But what i have realised now is that i would never go on cortisone tablets that were more than 5 mg and try and find healthier options to treat your pain or fatigue or if in the nose treat it fast and its ok to use the cortisone spray and the saline spray as much as possible. But i believe the biggest cure or relief from sarcoid is less stress and change your life style if is affecting you. I did and my sarcoid is getting more manageable, and in some parts of my body is cured.

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Welcome to a place you'd rather not be. Sarcland. You might want to read my journals to get a feel for a year in the life of sarc. Also, read all you can on the NIH, Mayo Clinic and FSR sites. FSR has a brochure you can download.
We sarcies are all as different as snowflakes. You may do well in not having it effect your life in a big way but others are not so lucky. Your best ammunition is knowledge and doctors who understand the disease. Good Luck.

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Hi Orrin - welcome, glad you found us!

Here are some tips in a nutshell.

Look up the Norwegian Diet in the search window at the top of this page.
Get plenty of sleep and excercise if you can.
Make sure you are followed for diabetes, high cholesterol, inc. b/p, kidney and liver functions.
Have a thorough eye exam at least once a yr. and have regular (every two three mos.) blood work to monitor blood glucose, inflammation markers, and Vit. D25, D1,25, PTH, serum calcium and 24hr urine calcium. (do not take VitD suppliments if your calcium is low until checking back here to get some good advice about that metabolism in Sarc).

Learn as much as you can about your disease and do browse our archives for specific symptoms and topics that have been addressed at length - it is a treasure trove. You will probably know more than your doc before long.

Tell us a little about yourself and what you've experienced so far. You are in the right place at the right time here at Inspire.

Hope you are well for the holidays,
I.

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Hi, Orrin, and welcome. I'm pretty new here, too, but it is definitely the place to be to find answers, friends, and a place to know you're not alone in this. I was recently diagnosed, and I have no idea what the future holds. I have pulmonary obstructive sarc, and a flight of stairs is like mount Everest. But I try every day to look at the good things and deal with this one thing and one moment at a time. I don't really have a lot of support around me, so I look forward to being here and feeling like I'm with others who understand. It's a great help.
The best of luck to you.

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They finally dx me in Nov. 2009, after months of pain, surgery, and them not knowing what was happing to me. I have it in my liver and lungs, and i'm on prednisone, plaquenil, and advair. I have asthma so the breathing sucks at times. So change any bad habits you might have. Try and eat better, I need to get my blood sugar checked, and blood pressure checked. I will be doing these things tomorrow. Good Luck...

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You are fortunate to have been diagnosed in less than a yr. Keep doing what you're doing - you're moving in the right direction and have a positive attitude to get you over the hurtles.

Merry Christmas,
I.

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I was diagnosed three years after falling ill, lungs is where they found mine. Not currently taking anything more than allbuterol, flovent, foridil when necessary and pain medication. ( I might be forgetting something LOL) Try to stay active as you can, eat right, If you smoke, quit. Avoid stress when you can! Its important! Welcome, this is a great place for support and info, and I am sorry you are here too.

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Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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