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23 diagnosed with Sarcoidosis, what's next?

Posted , 6 users are following.

Soon2BeMrs
Soon2BeMrs

I am 23 with a new baby and I was just diagnosed with Sarcoidosis. I've gotten bronchitis from the condition and my grandmother has been struggling for years with it. They won't give me treatment due to my other conditions. Whats next?

0 likes, 9 replies

9 Replies

  • Big_Mack
    Big_Mack Soon2BeMrs

    Posted

    You may not need treatment at this time, are you seeing a specialist to monitor your condition? Where do you have sarcoid? I have it in my lungs and see my Dr. every 4 months for a check up. I do a Pulmanary test to. As of right now for me I do not need treatment. Let me know how you are doing
    • Soon2BeMrs
      Soon2BeMrs Big_Mack

      Posted

      My lungs and I forgot where else. I'very been going once a month. I have a hematologist/ oncologist monitoring it. They also thought I may of had leukemia.
    • Big_Mack
      Big_Mack Soon2BeMrs

      Posted

      Dr's that specialize in sarcoid don't know how we get it, but will keep a close eye on it with Pulmanary tests. If your not taking meds for it then I would think that you just need follow ups like myself. Adjust your diet with anti inflammatory foods too! Don't sweat it if it's not active. And make sure you get a Dr that has experience in sarcoid. Hey your not alone in this. Keep asking and learn as much as you can with it
  • magdafloasiu
    magdafloasiu Soon2BeMrs

    Posted

    Hi,

    sarcoidosis can be confused with other pulmonary diseases, including fibrosis and cancer. I'm not sure why a hematologist/ oncologist monitors your condition. If it's in your lungs, you should see a pneumologist and he should do all those tests (x-ray, breathing tests, etc.). If the sarcoidosis has spread, the specialists you should see depend on the organs affected. At least, this is how they do it in my country; but it may depend on the healthcare system...And yes, if they have already established that your condition is dormant, you don't need treatment. However, it's very important to monitor (through 6-month checkups) it to know when it becomes active again. Usually, when sarcoidosis becomes active, the only treatment we get is prednisone.

    Big Mack is right about diets. Following an anti-inflammatory diet is one of the best things you can do to deal with inflammatory conditions. Also, I advise you to take turmeric (you can find all-natural capsules with turmeric powder; it would be better to find something organic and combined with pepper for better absorption).

    Bronchitis is an infection, and it should be treated (I don't really understand from your message if you're not getting treatment for sarcoidosis or bronchitis). You should ask your doctor why you got the bronchitis (it may be due a weak immune system, mucus accumulation caused by sarcoidosis); the underlying cause should be addressed as soon as possible to avoid recurrence. 

    That's all that comes to my mind for the moment. Let us know how it goes...

    Magda

    • Soon2BeMrs
      Soon2BeMrs magdafloasiu

      Posted

      Yes, they thought I had cancer initially and it is in my chest and in my liver. My doctor said my immune system is very weak and my white blood cells count have dropped drastically. The bronchitis was caused my the sarcoidosis. Due to me having osteoporosis in my bones though, I can not receive the only treatment (prednisone) so my doctors are not sure how to treat it. As far as the bronchitis, the media they gave me didn't work (I know because I took all of them) but I'm allergic the a lot of medications as well that they would use to treat me. I'm going to go look up ways to change up my diet too though. I have already had to change it for my osteoporosis.
  • Granny1957
    Granny1957 Soon2BeMrs

    Posted

    That is really mess up I am going to go to a specialist in Denver to get answers and see what than can do I got in both lungs and started a new place behind liver but couldn't give me Med. Because than say it would agitate it but it has already cause problem in stomach bloating but if not treat can move most drs don't know nothing about just stay on top of it if you sick get Med right away I just take mine day my day God bless you and have faith in god
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