It's complicated!

Hi 

I went to the GP with what I thought was the flu was taken to hospital with AF. the GP seems to think it is sarcoidosis is at work which I had an attack of 15 years ago but thought was over. Has anyone had sarciodosis which seemed to go dormant over a long period then the symptoms came back for whatever reason? I have no marks on the shins like last time but have breathing problems which had the same cracking sound upon inhalation and tiredness and also the Rapid Atrial fibrillation attack?

13 Replies

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  • Welcome achillallan, I'm afraid I know nothing about your condition, but I'm sure someone will come on soon who can give you advice. 

    Just wanted to say 'hi' & if you feel like chatting & joining in please feel free. We would love to hear more from you 😀

  • Pete has chronic sarc diagnosed in 1991. He takes lots of medication and also has COPD. He has.been in remission but has badly scarred lungs and heart probs.

    BLF have a leaflet on sarc and they will send you one if you request it.

    Welcome to you and glad you found HU. Xxx 

  • HI, can you tell me what COPD is? Also was the heart problem caused by Sarc? Thanks for the info.

    Allan

  • Hi Allan, COPD is an umbrella term (Chronic Obstructive Pulmonary Disease) for the likes of chronic bronchitis and emphasema to name but two. It causes breathing problems and is incurable but many people live long lives with it because of medication, exercise, eating well and generally taking good care of themselves and of course not smoking.

    We are not sure whether Petes heart problems are caused by the sarc, copd or other factors but he did have a heart attack in 2007 and was stented. At one time the Royal Brompton did wonder if he had cardio sarc but that does not seem to be the case.

    I do wish you well and hope that the info is what you wanted.

    Take care. xxx

  • Hi and welcome x

  • Can't help with your query but welcome to the group.

  • I have chronic sarc.  It has been dormant for about 5 years.  They thought it had burned itself out.  I have a horrible feeling its making its way back though.  I have heard of it returning after such a long time. Fingers crossed for you.

    Marie

  • Hi, yes it can come back after such a long time.  My pulmonologist warned me that it could flare up again when I am older (he suggested potentially decades later).  I wish you well hopefully it can be brought under control again. best wishesxxx

  • Thanks, when sarc started about fifteen years ago I had the red marks on the shins, breathing problems and was in and out of sleep for about six months. When it was over i was not told about a possible return until my doctor told me. so this is news to me.

  • I am sorry to hear of the relapse hopefully it can be brought under control quickly.  /she Regarding the dr not saying anything about the relapse he was probably hoping it would never occur and therefore you did not need to know....   by the way may I know your age?   Best wishesxxx

  • Hi

    Thanks for the reply. I am fifty and the last first full blown attack of sarcoid was about fifteen years age.

    Kind regards

    Allan 

  • Well Allan, you were very young when you had the first episode.  If it is indeed a sarc flare-up hopefully they can get it under control again and you will not be bothered by it again.   Leave no stone unturned to have it clarified/identified as sarcoidosis and if you have it again look at all available advice for treatment including diet and lifestyle changes if you think they may be useful.    Best wishes and please keep in touch.  xx

  • Hi

    Thanks for the great advice

    Kind regards

    Allan

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