Sarcoidosis...is there anyone out there with this?

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I found out in 2005 that I have sarcoidosis through a biopsy.  I was put on prednisone for almost 2 years.  In addition, I was taking mexotrexate and plaquenil.  From the prednisone, I gained 75 pounds and it wasn't from eating because mexotrexate took care of my appetite.  I was in and out of the hospital because I needed breathing treatments that had to be monitored. 

What I was told when diagnosed was that it would pass.  My friends all the sudden were experts on sarcoid and told me that if it stays, it only lasts 5 years.   They were actually counting down the years telling me well, only 3 more years..etc.  I was so frustrated that people who weren't experiencing what I was would tell me that I should be better by now..as if I'm faking this.  You cannot fake sarcoidosis!! 

How I became subceptible to this disease is possibly what some of you experienced.  Everyone has sarcoidosis in their body (one of many diseases we carry but most don't attack).  However, they don't even feel any kind of side effects.  Many times, people have gone to the doctor complaining of cold symptoms and find out they have pneumonia.  Well, that could and possibly was, sarcoidosis.  You were treated and the "pneumonia" was cured. 

In the year 2004, I had many surgeries from an auto accident; this compromised my immune system thus allowing the sarcoidosis to have a field day.  I actually believe I felt the symptoms of this nasty disease in late November of that year.  I was diagnosed in Feb of 2005.

The doctor's didn't know much about sarcoid, even the pulmonologist.  I had to do so much research on this disease myself.  What I did find out is some people just cannot shake it off.  Meaning, they will always have it. With that said, I have it in my nose, eyes, mouth, hair...in the upper region of the body.  I have to get checked to make sure it hasn't gone into the brain or heart...that definitely is fatel. 

Why I'm writing this is because I felt so alone and didn't even have a doctor to turn to.  I am hoping if anyone is suffering this disease, please join in on this discussion and share what you are going through.  This is a means of staying mentally healthy!  Hope to hear from you.

frustrated smile

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  • Posted

    Hi frustrated61,

    There is a Sarcoidosis group here https://patient.info/forums/discuss/browse/sarcoidosis-2174 where I have moved this discussion to.

    Regards,

    Alan

    Emis Moderator

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  • Posted

    Oh dear poor you, I'm sure all the folks on here will sympathise with you. I'm currently fighting another bout and waiting to see the ENT clinic as it seems to be affecting my sinuses and lungs so repeated chest infections and awful problems with sinuses. 

    In the time honoured phrase hang on in there you aren't alone in fact I think we are rather special given it's rarity! It doesn't just affect any old person it's the selective chosen few who have to suffer!

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