More granulomas, less symptoms - confused!

Posted , 5 users are following.

It's actually my husband who has sarcoidosis, not myself - but we just feel so confused by it all! 

Long story short - about two years ago, he had all these symptoms: night sweats, persistant cough, weight loss etc. He went through two months of tests (with the obvious fear being lung cancer) but the cancer results were fine - leaving him with the possibility of either sarcoidosis or TB. 

Anyway - for the last two years, he's been monitored regularly - every six months tests and X-Rays - but today's test showed that, despite having no symptoms, his granulomas in his lungs have increased significantly, and all other tests weren't showing great results either. 

This just leaves us feeling more confused about the condition - we felt so sure he was going to be told that things had improved, as he feels so much better in himself. The doctor was talking about the possibility of it spreading further, and even indicating that it could be life-threatening - as you can imagine, that sent us into something of a panic! 

Any information from fellow sufferers would be so gratefully received, I've been looking for information online, but there's not a lot about people who experience increase in granulomas without any symptoms. 

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16 Replies

  • Posted

    Hello my i was wondering has your husband taken any medication at all for his sarcoidosis
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    • Posted

      They're testing him again for TB (bronchioscopy?) then waiting six weeks, then talking about medication if TB test comes back negative? It's a waiting game, but made somewhat worse by the fact that we don't really understand the condition - originally they thought it was acute sarcoidosis and would be gone by now - but now we're thinking that's wrong, and it's actually chronic? 
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    • Posted

      I had a bronchioscopy done before it was how i was initially diagnosed. What im not understanding is why they are waiting so long to treat him i was told that it doesn't go away it could perhaps go into remission. Its a autoimmune disease its caused me to have lots of problems my eyes are always inflammed I suffer from arthritis and neuropathy in both legs please tell your husband to push the issue with the doctors for treatment this is one of those diseases that is treated sooner than later.
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  • Posted

    As they are doing a bronchioscopy insist that they  take a sample of lung tissue for testing. This will positively confirm or otherwise the sarcoid.

    Dont go through the proceedure than later come back for a sample. There is no point in having two proceedures when only one is needed.

    If positive then insist on steroids immediately.

    Regards

    Tangles

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    • Posted

      He had a bronchioscopy when he was initially diagnosed, which showed no active TB, hence they presumed it was sarcoidosis. So, for the last two years, he's just been managing his symptoms without meds - to be honest, it hasn't been so bad, he's had very swollen lymph nodes in his neck, mood swings, but nothing major. 

      But now, with the latest X-Ray, loads more granulomas showed up on his lungs, despite the fact he has no obvious symptoms. So they're re-testing him for TB (I think they found a TB marker in one of his blood tests ages ago) but then if no TB is found, they'll presume his sarcoidosis is getting worse. But we don't know what this means. Does this mean it's an acute attack that's getting worse, or that it's actually chronic, and something that could get progressively worse over time? Wish doctors would explain these things! 

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    • Posted

      Untreated Sarcoidosis will get worse!

      If he has Sarcoidosis then he needs to be on steroids. If his condition is getting worse...more scar tissue...he needs steroids urgently.

      Steroids have a long list of undesirable side effects which are well documented. However, they are the only med to slow or stop Sarcoidosis. 

      Without them the condition will progressively get worse. I cannot believe they have waited two years without treatment. What were they thinking? Then again it was not their health at risk...it was your husbands.

      Get him to a respiratory lab urgently...via a respiratory specialist for lung function tests. Lung volume, oxygen exchange etc.

      If your present doctor does not want to comply go immediately to another doctor. Present doctor has already wasted two years without treatment, whatever the condition is.

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    • Posted

      Well, this is what we're confused about. The original diagnosis was that it was likely to be acute sarcoidosis and would, in time, improve by itself. My husband went in for his recent tests (which included lung function), fully expecting them to say things were better. So we were both shocked when we found that the granulomas had got worse. 

      They seem quite set on testing for TB first before doing steroids, and the bronchioscopy is next week - but again, we're confused why they're testing for it again, especially as he has no symptoms! Then we have to wait 6 weeks for results, and only then will they prescribe steroids. Can it get significantly worse in six weeks? 

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    • Posted

      No

      Six weeks is not an issue...two years is.

      Insist on a lung tissue sample being taken during the bronchioscopy for lab testing for sarcoid and TB. Also insist on X Rays. Combining all of these test will give you a comprehensive report on his health.

      Ask if the results appointment can be moved forward.

      I often book myself into appointment dates that suit me, even before the tests are conduct.

      Often booking tests and follow up report meeting on the same day. Leave atleast a week apart to allow for lab reports to be processed.

      Best of luck, hope all goes well and you get a direction soon.

      Regards

      Tangles

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  • Posted

    Sometimes we need to take control of our own health. If the Doctor your husband is seeing is not getting any answers find another Doctor. Not all Doctors are the same so find one that will get to the answers. I was diagnosed with Pulmanary Sarcoidosis a year ago and basiclly I am managing the symtems with inhalers and cough supressents. The Doctor agrees with me that to take prednisone should be the last resort because of all the side effects. As long as I can deal with my symptoms I will stay the course but I am also being monitored for Sarcoitodis compromising other organs. So far so good. I have been told it could resolve itself with no intervention or medication.

    Hope you soon get those answers,

    Deb

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    • Posted

      I think the best thing I could do for myself is healthy eating and get that much needed rest. My eldest daughter turned me onto the Paleo diet and I feel much better since starting this diet. I think there are lots of good recipes out there just google paleo recipes or healthy recipes. I also take high doses of vitamin B. I think anything that can help boost the imune responses is good but I would also suggest you consult your specialist first because everyone is different that is the number one thing I am learning about Sarcoidosis. Hope this helps.

      Deb

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  • Posted

    Hi I'm 31 years old.

    I've recently been diagnosed with sarcoidosis. I've had x-Rays ct scans & a mediastinoscopy (lung biopsy) all of these occurring around September, october, November last year. After the biopsy I was off work for over 3 weeks...this is all before I had the diagnosis. I went to my gp over 6 times in the 3 weeks I called the local hospital & even called the hospital in Glasgow that carried out the biopsy to find out if there was anything I could do to get better! Then I got preliminary results from my biopsy saying I had sarcoidosis & not cancer yet there was an underlying infection they were still investigating they are testing me for tb exactly the same as your husband. I have never been given any medication although I have been going to hospital for check ups & pulmonary function tests (just had second app). It seems to be dragged out & like your husbands situation I hope it doesn't go on as long as his. I can understand how confused and frustrated you both are. Me & my partner have been on the complaints dept at our local hospital to get these apps quicker & pushed forward. I had a difficult year, being back and forward to hospital with other problems. Hope I can get everything sorted and hopefully you get things sorted!!

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    • Posted

      The sooner you start on steriods the sooner the battle against sarcoid begins.

      I hope everone's direction is set soon, so that your helath can be stabilised.

      Non treatment is not an  option!!!

      Regards

      Tangles

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