Sarcoidosis

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Back in October of 2016, I got sick, and it seemed to go right to my lungs. My breathing has been labored ever since then, and I was fatigued all the time. My GP sent me for all kinds of heart test, etc., which of course came back normal.  I finally decided to take matters into my own hands, and made an appt with a pulmonologist. He ordered a bunch of test, the ACE test which came back high, and an ANA test which came back positive. At my next appointment he said I had Sarcoidosis, and said we needed to look inside my lungs so he ordered the bronchoscope. He also put me on another round of steroids (my 4th in a few months), and a new inhaler, and singular daily. My breathing has not improved whatsoever, and I don't go back for my results of my bronchoscope until mid May.  Not sure what to make of all of this, and what to expect for my future.  I still try to walk daily, and I can't do much of anything else without becoming winded. Any suggestions on how to handle all of this, and any ideas on what kind of exercises I can do to stay fairly healthy without killing myself. 

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  • Posted

    Sorry to hear that you might have this curse (sarc) but I really don't have much to tell you since I'm newly diagnosed myself other than that you should wait until they give you the result of the bronchoscopy (for confirmation). Unfortunately, we (sarc patients) are the forgotten ones and it seems very few doctors know about this illness and all the potential problems and complications that are involved. It's like they have NO CLUE about how much suffering at least some of us have to live with.

    The other thing I can say is that with this damn disease NO TWO patients are alike (when it comes to symptoms and also what direction the disease might take). No one can tell you how it might progress either. Also, for many of us, no two days are the same (with how you might feel today vs tomorrow...). So, we're all like a leaf in the wind. Some will have some mildly annoying symptoms that won't affect their lives much and will likely recover after some time (might be years though) while less fortunate ones will struggle with much more serious effects for the rest of their lives.......

    As for exercising, it seems that doctors will usually tell you to do some walking at least -IF YOU CAN. Some people definitely can exercise even normally while others cannot because of the tiredness or SOB (shortness of breath). I guess you have to try and see where you're at.

    I don't know what else I can tell you other than good luck but you should tell your doctors if your meds aren't doing anything.

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    • Posted

      Hi. I am not the patient but the spouse. My husband too has the lung symptoms and suffers w repeated bronchitis. Do get checked for that if you're breathing gets more labored or like watery sound at night. I do alot of praying and the positive thing is the way it came it can go. Self resolve. That's the hope. Just try and google any specialists . Drs that treat sarc. We have one here but haven't gone yet. Other than this keep focused as you can on enjoying the simple things. A great sunny day, a nice dinner. Support. Fight. Praying for all w this diagnosis. Bless you. If you believe in God draw clise to Jesus read psalms and just sit in peace. Take care friend.

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    • Posted

      Thanks, and you're right.  Every day feels like something else is going on.  Unfortunately the shortness of breath never leaves, it is the one constant.  The other joint pains and muscle cramps, seem to come and go randomly.  It was 85 degrees when I left work yesterday, and didn't think I would make it through the parking lot to my car, I was so out of breathe.  Ughhh!

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  • Posted

    Thank you for your response. I am seeing a pulmonologist, and he has been amazing.  My regular doctor kept sending me for heart tests, and I get it, but the breathing wasn't improving.  A couple of years ago, I was sent to a rheumotologist, because of high numbers on blood tests, but now it's all coming together and starting to make sense. I guess it's a relief to finally have answers, but also kind of scary because I don't know what the future holds.  I do believe in God and Jesus Christ as my savior, and I do pray everyday. Prayers for peace within myself, and the strength to keep moving on the bad days. Thanks again!

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  • Posted

    Hello,

    My sarcoidosis started in my lungs as well so I can sure relate to what you're experiencing. The good news is my lungs did improve, it just took some time. Seems that's the case for most patients, that it usually peaks then gets better so hopefully It will

    Be the same for you.

    From what I've experienced personally and leaened, it takes some tweaking to get the right dosage of prednisone in order to start treating your sarcoidosis. In many cases, one prescription of prednisone isn't enough and the patient needs to be on it for months. When it was active in ky lungs, I was on prednisone for over a year and still having problems so they added methotrexate and plaquenil. About another 2 years and I was able to come off all medication. I have some good scaring but not much activity and that was back in 1999. 🙂

    As far as excercise, I would keep doing what you're doing. Walking is excellent. Just don't push yourself or you'll pay for it. Sarcoidosis also causes fatigue and you can wear your body down very easily. Walking is excellent for your lungs though so if you can handle it, without making yourself miserable, is not stop.

    If you're having very much of a problem with getting short of breath, I would call your pulmonary doc and not wait till mid-May. They will understand and even if they can't do anything to help ... at least they will

    Know and you'll know.

    I hope you get some good solid answers and a plan in plan for your sarc care. Best of luck!

    Deb

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  • Posted

    Just had to say sorry for all of my typos!! I wrote my first post outside in the sun and couldn't see very well, haha! Did not realize just how many goofs I had made.

    I was diagnosed with sarc in 99 and it has affected multiple organs over the years. It's still a battle and for me, will the rest of my life. But God is with me every step and I'm ok with it!

    I have experienced a lot and learned a lot over the years so if I can help answer any questions, please don't hesitate. ??

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    • Posted

      Thank you Debie, no problem with the typos, I got the gyst of your conversation.  It sucks not being able to breathe normally, and to not be able to fully do the things I once did. I was eating healthier and exercising 3 times a week and walking daily, then got sick.  It's scary to think that there is no cure for this, but hopeful to hear that it can get better.  My Mom died of COPD, and it was not pretty, so this scares the crap out of me. I want to be able to live a full life and watch my grandbabies grow up, graduate from college, get married and have babies.  With that in mind, I just push myself every day to do what I need to do.  Some days are worse than others, what with the shortness of breath, and the other aches and pains that come along.  I am just thankful the Good Lord allowed me another day!  Thanks again, and it helps to know I'm not alone. I never heard of sarcoidosis until my doctor said it, but ever since then, I have been informing myself as much as possible on what to expect, what to eat, etc.  Thanks again!!

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  • Posted

    Chi Tai you can watch videos on youtube you can do by sitting in chair.
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