Sarcoidosis -is there a definitive test to diagnose it?

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my husband has been unwell now for 14 months.

he was hospitalised and was told he had pneumonia.

certain symptoms persisted and a consultant felt he had had sarcoidosis but it had gone.

our problem is the breathlessness, dry cough and fatigue remain. Prednisolone works wonders AT THE TIME but the effects quickly wear off -he is now on his third dose of prednisolone since 25/4/2014

An ENT scan shows one nostril is completely blocked and the other partially so he also has difficulty breathing because of that too -could this blockage be caused by sarcoidosis?  I feel we are being shunted from pillar to post as no-one seems able or willing to say exactly what is wrong. He has had extensive tests -cardio-pulmonary, spirometry etc. he has been in bed for 36 hours waiting for the latest dose of steroids to kick in. We are at our wits end.

Connie

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8 Replies

  • Posted

    Hi nancy 

    sorry to hear about your husband😔

    i was unwell for two years before I was diagnosed 

    and it was becaouse I had large noduels on my lungs that gave then the final prove -

    i am on the same med as your husband - and have been taking them for 24 weeks 

    started off with an injection and six a day - 

    this improved the chest pain cough fatigue swollon feet and joint pain 

    however as I am reducing them to two a day the symptoms came back - 

    there are two types of sarcoidosis acut and chronic - if you husband has no noduels on the lungs it may be acut and clear in a couple of years - I am not well in the sun 

    a urin test will give you a reading of high calcium - and I have anti nuclear antibodies in my blood - 

    the woman on hear really do no there stuff and when they pick up your post 

    they will be able to help more 

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  • Posted

    Hi Nancy

    Sorry to hear about your husband, can't be easy for him or for you. Especially if nothing much is happening at times. 

    I think the dry cough and the fatigue are pretty common among folk with sarcoidosis. I tend to have the cough, I also get tired a lot more easily than I used to and some of the other ladies really struggle with that one. 

    I don't know if blocked nostrils can be sarcoid related or not to be honest but if ENT have found a problem my question would be "So what are they going to do about it?" Surely there must be some sort of treatment they can offer. 

    When I was on prednisolone it was a more long-term treatment than lots of short bursts, which is what it sounds like your husband is receiving. I was on 30 mg/day for about 6 months then gradually reduced. My guess is that a short term course of steroids will have a short term effect to make you feel better but not enough to be able to get rid of sarcoidosis (as much as anyone ever gets rid). So it might be worth your husband's time talking to the doctor about taking it for a longer period ie several months at least - as far as I can tell that's the normal treatment

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    • Posted

      hi Morag

      thanks for your quick reply. 

      No-one but no-one has ever suggested taking steroids for a longer time but it's obvious that that is such a good idea. My husband is very anti-steroids-are there any alternatives which work as well?

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    • Posted

      Oh dear, how I feel for the pair of you! I am currently waiting for an appointment at my ENT clinic as the repeated sinus infections I am getting that don't respond to antibiotics and the chest pain too is particularly painful today. My last consultant told me that she found granulomas when I had a mass removed from my head a couple of years ago but like your husband I am very loathe to use steroids particularly as the nasal spray can cause nosebleeds! I have been to a qualified herbalist who specialises in autoimmune conditions and that has helped keep my symptoms at bay..

      turmeric was mentioned today as having good anti inflammatory  properties so I shall be trying those for a while to hopefully ease my chest pain.  Yes sarcoid can affect the nose, it will go for any organ!

      Hang on in there we can all sympathise it's just a question of time and patience regrettably but at least with this site you have the comfort of knowing there is morale support for you both.

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    • Posted

      A lot of the time with sarcoidosis they tend to treat the symptoms you're displaying and steroids are used as most of the problems are related to inflammation. So other medicines would depend on what's being affected. But Rachel's suggestion of turmeric could be worth trying - or maybe there's a health food shop or herbalist in your area that your husband could consult. See if there are other possibilities down that route. 
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  • Posted

    The truth is so little is known about the condition, patients are often left in the dark. A bronchoscopy or mediastinoscopy should hopefully reveal all. I've been on steroids off and on (mainly on) for over 7 years. I've certainly had a blocked nose caused by the condition but never had a nostril completely blocked. I wish him well. Keep the forum posted. Has he had blood tests? A check of his ACE levels could provide a clue also.
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  • Posted

    Hi Nancy,

    I'm so sorry to hear about your husband's illness. One of the things that bothers me is the fact that your consultant saw fit to stop and start the steroids. What this has allowed the Sarcoid to do is to flare up again.In severe cases of Sarcoidosis it is not unusual to be on steroids or 3 years straight. As the disease comes under control the doctor can adjust the amount to the lowest dose that keeps the sarcoid under control. I am on steroids for life as every time they try to stop the steroids back comes the sarcoidosis. I understand your husband is anti-steroids but when you weigh up the consequences of not taking them, there is little contest. The sarcoid can do just as much damage if not more than any side effect from the steroids. Stopping and starting them can be very bad for you so better to get the sarcoid under control once and for all and then find a maintainence dose of steroids. This can be as low as 2.5mg but the sarcoid must be under control first and if prednisolone has worked wonders in the past then that should tell you something. Other medications used to treat Sarcoidosis are the chemotherapy ones which can carry even more side effects.I'm totally with Morag on this one. You really need to go and talk to your GP about staying on a prolonged treatment of prednisolone.

    The ENT specialist should have told you what the mass was. It's not in their interest to keep anything from you so just ask them what it is. It is possible that they have sent a biopsy of it away for hystology. The special tests they do take several weeks to get a result so that could be why they didn't tell you. I have had skin biopsies done several weeks ago and I am still waiting for the results.

    I'm sorry you feel you are being shunted from pillar to post. Unfortunately Sarcoidosis attacks different parts of the body so different consultants need to be involved so that the best treatment for each area can be prescribed.

    I hope you are able to convince your husband to stay on the steroids for longer.

    Best of luck

    Kindest regards,

    June

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  • Posted

    Hi Nancy

    I come from Australia a bite remote from all of your other responses but prehaps I can help a little from my long term exposure to sarcoidosis. Based on my experiences, I am no expert and I am not a doctor. They believed I had Asbestosis based on lung Xrays.

    Confirmation of the condiction was in 1984 then confirmed by a lung biopies and again confirmed in 2008 by bone marrow biopies. I believe a biopies is the only way of positive confirmation for your husband. I hope that helps with one of your questions as to how do you confirm this illness? I realise these are invasive but the result is conclusive.

    Initially I was placed on steriods prednisolone at 20mg daily. After some time there was no benifit, they told me to gather my family around over Xmas. That was a concern to me. They then contacted their American associates who said forget 20mg jump him up to 60mg. Two years exposure to this finally fix the problem but you can not jump on and off prednisolone. It took two years to reduce the dose and take it off.

    I still suffer from other issues from the illness but the lungs are fine and I have celebrated many Xmas with my family since then, thank goodness.

    I want to start my own item to try and find out more about joint pain which has been a problem for many years now. As I am now getting older this has become a greater problem. I need to find out if there are any way of addressing these issues as there are many things left to conquor in my life and my joints are restrictingme Whilst I can still catch the mighty marlin, I want to go back to scuba diving and swim with the marlin. Also I want to climb the Kokoda trail in Papua New Guinea in memory of my father who servere there during WW11.

    I will have to be very fit to climb those mountain rangers.

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