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Posted , 4 users are following.

parvezchandio
parvezchandio

Doctors have kept me on ATD since last six months but they don't confirm me weather I am suffering from TB or Sorcoidosis. My ACE level is more then 150 since last six months. Physically I feel better but why this ACE doesn't come down and why my X-Ray don't give positive result. I am confused what to do.

0 likes, 8 replies

8 Replies

  • magdafloasiu
    magdafloasiu parvezchandio

    Posted

    Hi Parvezchandio,

    I'm not sure what type of medication ATD is...as far as I know, the only treatment for sarcoidosis is anti-inflammatory medication, such as prednisone. Most probably, the doctors cannot confirm whether you have TB or sarcoidosis because both diseases look similar on x-rays/CT scan and can be characterized by high ACE levels. There are no tests to differentiate TB from sarcoidosis, except maybe the TB culture (if you have sputum).

    Typically, ACE levels should decrease after the patient starts taking prednisone. However, in some cases, the patient may not respond to this drug - or may respond after a looong time (up to one year). Additionally, if sarcoidosis has already caused fibrosis, your x-ray will look the same, irrespective of the drugs you take.

    I've been taking prednisone for the past year and my x-ray looks the same; the only difference is that my pulmonary function test improved by 2 percent smile; I also feel slightly more energetic than before...

    Most probably, you don't have TB (in most cases, TB is accompanied by cough with yellowish/greenish expectoration; low-grade fever; weakness; night sweats; loss of appetite; decreasing pulmonary function; increasing exertional dyspnoea; and new inflammation/infection marks on x-ray). Also, the fact that you feel better without any anti-TB medication shows that you most probably don't have it...unless you suffer from a very, very rare form of TB (nodular TB).

    In addition, ACE may not come down as long as sarcoidosis is active (it may be active for years), even if you take prednisone. Typically, ACE levels decrease when sarcoidosis enters in a dormant phase.

    Unfortunately, there's nothing you can do. You can research online and read as much as you can about this disease. Understanding its mechanism of action could help you cope with it much better.

    Good luck and take care...

  • amanda93807
    amanda93807 parvezchandio

    Posted

    My late husband had lots of trouble with diagnosis even after having a liver biopsy and nerve biopsy. The doctors sent him from hospital treating him for spinal tb and not the steroids however after a few months his symptoms returned and was readmitted to hospital where the doctors started treating him with high doses of steroids and started to feel somewhat better. The professor said that he had neuro sarcoidosis this was prognosis of illimination and took lots of time and tests. Hope this helps a little. Good luck.
  • frustrated61
    frustrated61 parvezchandio

    Posted

    Hello Parvezchandio ~

    I'm not sure how they test for sarcoidosis where you live but in the USA, I was dx'd from a biopsy of the lymph nodes and lung tissue.  Also,  in the xrays and MRI's showed the scar tissue that is a sure factor of sarcoidosis.  

    I would ask my doctor if I was in your situation if I could see a Rheumatologist as that kind of doctor would most likely be caring for your sarcoidosis.  If you doctor refuses, perhaps ask if you can see if you could get a biopsy.  If they say, what would they biopsy, you can tell,  they know nothing about sarcoid but you could tell them they can biopsy your lymph nodes...it's usually profound in the lymph nodes.  

    When one is dx'd with sarcoidosis, the doctor will check the ACE often.  Maybe you need to ask for a CatScan rather than X-Ray...Ctscans are more definitive in results.  

    This is what I would recommend and I wish you luck.  Sarcoidosis is nothing to make light of.  I was dx'd in 2005 and this past year, I was told that the sarcoid is still very active and I'm on oxygen now.

    Good luck and please come back and let us all know what transpired in your next doctor's appt.  You have a lot of good information from the three of us so...go to combat!

    Warm regards,

    Frustrated 

    • amanda93807
      amanda93807 frustrated61

      Posted

      Wish my late husband was in the US I'm sure they are more intensive with treatment than in the UK. It's all about cost and the NHS is going down the pan.
    • frustrated61
      frustrated61 amanda93807

      Posted

      Amanda ~

      I'm very sorry for your loss.  In many ways  the US are more intensive yet in other ways, not so much.  I believe everything happens for a reason.

      You didn't mention what your husband passed from.  If you don't mind and only if you want to, would you explain how he passed?

      Thinking of you

      Frustrated

    • amanda93807
      amanda93807 frustrated61

      Posted

      He had neuro sarcoidosis and was diagnosed in 2008. It flared up again July 13 and over here the hospitals basically from then every time he was admitted to hospital they got his observations and hormone levels stable and discharged him. The amount of flaws within his admissions were ridiculous and I'm not a doctor. I mean giving food supplement with fish in when he was allergic in intensive care for one. The coroner put his death down to cerebral cepsis in the end but would love to know how they came to that conclusion when his illness was prognosis of illimination. Bless him and our children. Our son has cerebral palsy and doesn't understand where he is.
    • frustrated61
      frustrated61 amanda93807

      Posted

      Amanda ~

      Again, I'm terribly sorry for your loss.  I lost a dear friend a few months ago and the hospital displayed many of the same mistakes you've described.  My friend's wife (who is a life long friend of mine) is trying to get the exact cause of death.  They  did present a death certificate but she's asking they show cause.

      Nothing will bring them back but it may feel good to get to the bottom of the mess you described and make someone(s) accountable.

      Again, I'm so very sorry of your loss.  And, not only bless your husband and children but you as well.  I'm sorry about your son wiht CP...that has to be hard.

      Please take care of yourself and know that other's you don't even know do care about you.  I will pray for you and your family.

      Warm regards,

      Frustrated

    • amanda93807
      amanda93807 frustrated61

      Posted

      Thankyou so much for your kind words. Bless yourself and your family and friends also. Xx
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