Just diagnosed

Posted , 5 users are following.

I just been diagnosed with stage 3 sarcoidosis. Doctor started me on prednisone daily for 6-9 months. In the past year I have been on 40-100 mg on and off more on than not. No relief. I had no idea what this was and not idea I had it until my biopsy confirmed it last week. I'm extremely depressed I have a 6 year old son I'm raising by myself. My doctor is telling me that it's not a serious disease but after some research I disagree completely. I'm 34 yrs old. Having shortness of breath, coughing, severe stiffness and pain in my fingers and knees, wheezing, and chest pain. I could definitely use some help and knowledge. Should I get a new doctor or just wait 6 more months in hopes of some relief?? I'm desperate as I have been the past year struggling with all of the symptoms just to be told I have pneumonia and bronchitis. Only to finally bothering the doctors so much and getting a cat scan, pet scan, and finally a biopsy to confirm this new diagnosis of stage 3 sarcoidsis.

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  • Posted

    Hi Michelle. Don't despair, it may be possible to control some of the symptoms you describe. BUT I would certainly go back to your current doctor if you're not seeing any effect from the medication after 6 months. I assume that you're in the USA if you're on Prednisone ( Usually use Prednisolone, which is similar, here in the UK). Can you see a doctor who specialises in Sarcoid?

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  • Posted

    Hi Michelle,

    Yes the doctors like to tell us all this disease is not serious but anything that requires chemotherapy to treat is most definitely a serious illness!!

    If the medication you are on are not working for you go back to your doctor.

    Best wishessmile

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  • Posted

    Sorry to hear this I completely know how your feeling my partner startes with this illness in January hes only 30 and we have a 2 year old. Hes never been the same since. Hes not been able to return back to work. He gets infections almost every 4 weeks and we have just been told that the inflamation on his lungs have left scarring. Theres Absouloutly no help for us and with it beonf so rare its hard to find the correct answers. I would love to tell you not to go back to the dr but its much easier said than done.
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  • Posted

    Hi Michelle,

    Im really sorry to hear of your illness. Its terrible isnt it? 

    I live in England. I used to have my own business, and had private health, BUPA, which is supposed to be the best you can get over here. 

    Everyone on the UK site SILA, the main charity for Sarcoidosis, used to say, that they went to see their pulmonary cardiologist, and after a year, they were suddenly told, oh! Youre ok! 

    I dont now what the system is like in the USA. Im presuming thats where you're from.

    I couldnt believe it when, after a year my pulm card did the same thing to me.

    He didnt look me in the eye, I think he was a bit embarrased. 

    Thats because of the system. A consultant has a year to assess you. But in truth, they cannot. I remember asking him will I get any worse? He said no. I did do. 

    I learnt two important things.

    One, they dont tell you everything that they put in their letters to your GP. So get a copy of all of your correspondence if you can. For instance. I have very bad fatigue.

    My consultant never said this to me, but in writing to my GP, he mentioned, that everyone he sees with the disease reports this symptom, but he didnt know how to deal with it. If he had simply told me that, it would have been much better.

    And two, I dont know about you, but I always felt as though I was being doubted by the very specialists who are supposed to help you. The truth is, that they simply do not know very much at all about the disease, its causes, or how to treat it. But doctors being doctors, they dont tell you that! Crazy IMO.

    It can be very difficult. Very. 

    I read that in the UK only 1 in 10,000 people get it. And only 2-5% get serious. Im serious. 

    I wish I could help, and offer some advice, but its just tough. I started out with stage 3 as well. Seven years later, I have pulmonary fibrosis. Im past caring. But then again I dont have young children.

    You need support. Im one of those who is no good at asking for help; its a character flaw in reality. 

    But you should. You should get into a support group. Meet other people regularly if you can, whom have it also.

    Desperation is common. Dont let them overmedicate you. Its not good, and in the end, highly toxic drugs like methotrexate, and pred, sometimes just dont work. Steroids are just designed to suppress your immune system, to stop the growth of the non maligant tumours, or ganulomas. Your body recognises the tumours as foreign mater, and sends 6 or 7 lymthocites to surround it. This then causes inflammation, and the tumour  in your bronchial airways looks like  giant zit, with a red inflamed bump, and a small white tumour on top. All they can do is give you prednisolone to suppress your immune system, so that the bump goes down, and its easier to breathe.

    The specialists, begin to ask you, is it working, and you begin to feel like a guinea pig. If you cannot breathe, all they'll say is take some more pred, if you can breathe, take less pred....

    It took me two years and thousands of pounds to realise that was the extent of their advice. 

    Are you a spiritual person? Are you aware of your spiritual needs? Im not talking about some BS homepathy, oils and crystals, or neccesarily religion. 

    But you will not find peace, and some sort of comfort and relief, from the medical profession. Not Doctors. They do their best, but are scientists. And in the end, comfort, understanding, a person with a calming demeanour, is what you may find you crave.

    Pyscologists, may help with coping mechanisms, and a doc should refer you if you ask.

    That may help, but be critical. If you dont feel they are right for you, tell you're GP, and get referred to someone else. 

    Loneliness becomes a part of your life. Next to impossible to find a partner, when you're ill, I've found. 

    I hope you can find some help. Id start looking now.

    Best, Dave.

     

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    • Posted

      Should have read;

      Steroids are just designed to suppress your immune system, to stop the growth of the inflammation, surrounding the non maligant tumours, or ganulomas. [You see them on the screen when you have a bronchoscopy]

      Your body recognises the tumours as foreign mater, and sends 6 or 7 lympthocites, to surround it. This then causes inflammation. The tumour  in your bronchial airways looks like giant zit, with a red inflamed bump, and a small white tumour on top. All they can do is give you prednisolone to suppress your immune system, so that the bump goes down, but the tumour remains, as its untreatable, but supposedly easier to breathe, with no inflammation. 

      And that, is all they can do for you; its not enough, by a long shot. And everyone with this terrible [ignored, and misunderstood] disease desperately needs pyscological support of some kind.

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