Sarcoidosis and TB

Posted , 4 users are following.

Hi Everyone

I just need some advice as i really don't understand this.

My dad has had sarcoidosis of the lungs for about 27 years, he is currently 54. He has been on predinisone for a very long time, sometimes having to increase the dosage and sometimes having to lessen it. He recently had a heart attack and needed 2 stents inserted into his heart and currently takes 10 tablets a day, for the sarcoidosis and for his heart. He is a very healthy man and very active.

Two weeks ago his professor randomly did a sputum test and found out he contracted TB. We don't know how long he has had it as the professor said they couldn't pick it up on the X-rays as his lungs are so scarred that they couldn't pick it up.

The professor then prescribed an antibiotic that he needs to take 5 times a day for the next 6 months.

Last week he had to be admitted to hospital because the tablets wasn't agreeing with him, he developed thrush in his mouth, developed a big rash on his back, with cold/hot sweats and not appetite. After all the blood tests the doctor realized that the TB medication was affecting his lungs.

They have now tried another lot of TB meds, but this is affecting his liver too.

I have no idea what to think, i don't know hownthis affects the sarcoidosis and his heart.

It's all very scary, if someone could please give me some input and advice about this.

Thank you

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9 Replies

  • Posted

    My apologies, they picked up they the TB meds were affecting his liver, not his lungs.
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  • Posted

    I'm so sorry to hear your Dad's story. I can only imagine how confusing and scary it all must be.

    I'm afraid I've never heard of a Sarcoidosis and TB comorbidity.

    They used to think there may be a link between the two diseases, (ie wondering, was Sarc somehow caused by TB..) but I believe that this has been discredited.

    If I was in your shoes I would get second and third and fourth opinions. There is WAY too much (complicated and unusual stuff) going on for your poor father. It is unlikely that there is any standard protocol or treatment to apply here, therefore the Doctors will be relying on their personal experience & intelligence even more than usual to determine the best treatments.

    Don't be afraid to ask questions & make a bit of noise. You are in a very difficult situation.

    The best of luck to you and your Dad, I really hope there is a positive result for him soon.

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    • Posted

      Yes, I was sick for 5 years with Sarcoidosis. I had stage 4 and was very sick. But I am lucky. I took a very aggressive approach to being proactive in managing my treatment/ lifestyle mods & it worked. I've been in remission for a long time now. There should be a little more info if you touch on my name/ profile....

      (? I think?)

      There should be support groups for TB too, have you asked them for help too? It seems as though the TB may be a more acute issue over the Sarc...?

      Anyway, many (((hugs))) to you and your Dad, you both deserve a little comfort smile

      P.s I just want to stress that I really do think luck was a part of my success. I don't think everyone can heal their Sarc by just 'trying harder' or anything like that!

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  • Posted

    Hello Kirstin,

    When I read that your Dad developed thrush, it sounds like he is allergic to the anti-biotic. It's also a worry that he has had trouble with it irritating his liver. Is there a possibility he has sarcoid induced hepatitis and the drug is exacerbating that, causing pain?

    Is the drug penicillin? Remember that penicillin is a fungus and as such can cause thrush in the mouth which is also is a fungus.

    I developed an allergic reaction to penicillin despite having been on it for years previously from when I was a kid. My first thrush incident began in the mid 1990's and progressively got worse. I am now 53 yo.

    My doctor told me I will no longer be taking it. Asked why, she said that I will eventually become so reactive to it, without warning, I could quickly go into anaphallactic shock and die.

    As I am a sarcoid sufferer and asthmatic, I now have a very limited amount of anti-biotics available to me. My doctor has to manage this narrow range of drugs very carefully. Rotating them so I don't "get used" to an individual drug, thus developing a resistance to it.

    You must find out if the drug your Dad is taking is penicillin and go from there.

    All the best for your Dad. I hope he get's well soon.

     

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    • Posted

      Hi Zss

      The doctor did advised that he had an allergic reaction to the first TB med, but after doing blood tests they advised that the TB med was affecting his liver aswell. Im not sure if there is penecillin in the TB meds,but currently they are trying each TB med, one at a time, to see which affects his liver the least.

      They have also now increased his prednisone dosage to 4 tablets a day...before the stint his was on 2 tablets a day.

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  • Posted

    Hi,

    Was your dad on any other medication for his sarcoidosis other than prednisone? I ask as I've been on treatments that have required I be tested for TB every so often as the medications raise my risks of contracting TB while being on them. I was just tested again 5 weeks ago and luckily it was negative.

    Prednisone alone does not require frequent TB testing to my knowledge.

    I'm sorry he is having such a battle right now. I'm sure they will get him on a medical treatment that will work for him but in the meanwhile, it has to be difficult for him (and you).

    Best of luck,

    Deb

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    • Posted

      Thanks Debbie

      He had only been on prednisone for the sarcoidosis. Currently they are trying all the TB meds and will settle on the one which affects his liver the least. He is now on tyne third batch of TB meds and it's still affecting his liver...they have another ten more to go through.

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