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Sarc relapse help? Recovered frm Stage lll 13yrs ago, can relapse come with new symptoms?

Posted , 4 users are following.

InRemission
InRemission

Hello,

I recovered from stg 3 Sarc (in lungs, lymph, joints, sinus) 13yrs ago, after 5yrs of illness and 2yrs of steroids.

I now have Erythum Nodsum (sp?) - red painful bumps on lower legs.

Research suggests that 'EN' is associated with a specific version of Sarc, Lofgren syndrome, which is usually resolves quickly and without treatment.

I'm scared to go to the Dr, as I don't want to face the tension & round of tests to exclude a Sarc relapse. It's not something I want to go through again...

I wonder if it's very likely for a relapse to come with a whole new presentation of the Sarc? Or is it unlikely to be sarc, as I never had EN the last time?

Does anyone have any experience or advice which may help me decide what to do?

Best wishes to all who are currently battling with their Sarc, I truly understand your pain and your exhaustion. I was not expected to recover last time - but I did, so please have faith it can get better x x

1 like, 4 replies

4 Replies

  • AmandaPC
    AmandaPC InRemission

    Posted

    Hi,

    I had sarcoidosis on my lungs back in 2010/2011. I suffered for 7_8 months with pain but aadvised by doc at the time that steroids were not necessary.I was told that it went dorment. I continued as normal for the next couple of years but then I got hit again with pain after biopsies and several tests it turned out it came back with a vengence. Started on my spleen, spread to my liver, then my leg and finally back to my lungs, I am now on steroids as now it is chronic meaning that it is back and lasting much longer.

    Personally from my experience if I had signs of anything at all on my body I would get checked at the end of the day I would rather be safe then sorry and with the speed it can spread you really dont know where it ends up

    Hope this helps.

  • tangles
    tangles InRemission

    Posted

    Hi

    Had sarc 30 years ago will not bore you with all the details.

    Yes can come back.  A few years ago I had red lumps. like volcanos on my lower legs no doctor know what it was or really cared. Got over them but still have red marks on the legs that no test can identify. I have previouly hear that Erythum Nodsum can happen with sarc. Sounds like we both have a case of them.

    Regards

    Tangles

  • Newton
    Newton InRemission

    Posted

    Hi

    I had EN as a child, but didnt get chronic sarcoid for another 40 years! I guess it can work the other way around too. There are other things that cause EN, its not exclusive to sarc, but with your history you should be suspicious. I really think you should tell your doc and ask for a few blood tests and maybe a chest xray if you are at all breathless. It could just be a 'reminder' rather than a sign of relapse. Your story gives strength to us all!

    Cheers, Newton

  • InRemission
    InRemission

    Posted

    Thanks to AmandaPC, tangles and Newton for your replies.

    I've had a bunch of blood tests and a chest X-ray and it's sort of good news...

    The chest X-ray was still clear and the ACE test came back negative so probably not a Sarc relapse (Yay!)

    Also tests for Rhumatoid Arthritis, Leukemia, Lupus and some of the other known causes of EN all came back negative. (Yay!!)

    So at this point it's marked idiopathic, but the Dr wants me to see a specialist to be sure...

    Best of luck to all of you, thanks again for your kind replies, you gave me the courage to go to the Dr & get tested.

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