Sarcoidosis

After being tested for rheumatoid arthritis (negative) one of my blood tests showed very high levels which is very indicative of sarcoidosis. The consultant feels this may be causing my joint pain and also the rapid deterioration in my lung function recently and even less control of my asthma. Im due to see my resp con early dec and have been told that he will orgainse a lung biopsy which im rather nervous about.It may also be linked into my recent cardiac probs too.

Just wondered if anyone had any knowledge or experience of this illness. thanks in advance.

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  • Hi Hopalong,

    My dad was diagnosed (eventually) with this about 5 years ago. He had sarcoid lesions in his lungs. His calcium levels are kept under control with oral steroids. He has regular blood tests and if needed the dose of steroids is juggled to keep the calcium levels under control. He did suffer some kidney damage before finally being diagnosed as his calcium levels were wayyyy high. Since then he has his sarcoid well in control and lives a normal lifestyle.

    I have a feeling that in some people the condition may spontaneously resolve although I'm not sure. My dad did some research on the net, unfortunately I can't ask him for any websites as he is in Macau for 5 weeks (told ya it didn't slow him down :oD) but I could ask when he gets back.

    Hope you get on ok

    Feejay

  • Thanks Feejay, im already on a nice large dose of oral steroids for the asthma so the con reckons that has probably made things harder to diagnose. he did mention calcium levels and said something about more bloods but didnt give me a form so will wait on that 1!! I also have chronic kidney disease and am wondering if there is a link there too!

    Glad to hear you Dad is doing ok i have not intention of letting this blip stop me doing what i want unfortunately the lungs already do that too much!! very much a case of doing what i want when i can and making the best of it!!!

  • Hi.

    I had a very close friend with sarcoidosis and also my cousin has it. My friend ahd sarcoid lesions in her lunmgs but my cousin has it in her neck and face causing a very swollen side of her face and neck. My understanding is though that it can effect people differently.

    If you want to pm me I would be happy to tell you waht I know.

    Olive

  • Hops, you see quite a few people with sarciodosis at the RBH they tend to be to have a course of IV steriods and the good news is it does get better. My SiL was quite poorly with it, it was a long old process but she did eventually get better. I am sure their must be some support sites out there.

    Good luck and if it is sarcoidosis at least you know it is treatable although I think it is one of those that can ""flare up"" again.

    Bex

  • here is the support group/charity

    tinyurl.com/yhsng3s

  • My husband had to have a biopsy of his lymph nodes behind his lungs. It came out fine and was not difficult. We were very scard but the procedure was not difficult and he was home the same day.

    Good Luck !

  • Hi,

    My husband had the lung biopsy 5 months ago and lymph node biopsy too. All were negative - whew ! The procedure was a piece of cake. He was diagnosed with sarcoidosis and takes symbacort which has stopped the cough.

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