1. Community
  2. Chest and lungs
  3. Sarcoidosis

My dad is having a hard time what can i do???

Posted , 4 users are following.

katie410
katie410

My dad has stage 4 sarcoidosis. He has had it for a long time and did not even know about it, there for it has spread through his body. It is in his lungs ,chest, on his skin, and is not getting any better. He is now taking cancer medication. It is so strong that he can only take it once a week. He may lose his hair, may throw up, or die if he gets sick. A cold is like pneumonia to him. Can someone tell me what this means and how bad it is???sad

1 like, 3 replies

3 Replies

  • tangles
    tangles katie410

    Posted

    Katie

    Most importantly stay strong for your dad and keep giving him your support. Family support and understanding is vitial to him right now.

    Recovery can be a long term thing, so persistence is important.

    Have faith in the doctors and follow their instructions.

    Keep asking them questions...that is your best source of answers.

    Lungs /chest is the most common location for Sarcoid to manifest and is treatable with steroids.

    If his skin is itchy try Urederm it helps me.

    You are doing a great job...Keep up the good work.

    Regard

    Tangles

  • debie1966
    debie1966 katie410

    Posted

    Hello,

    Asking questions is the best thing you and your dad can do, so excellent start. I started methotrexate and prednisone at first and overall took both, along with folic acid, for a total of almost 9 years. The methotrexate is probably what you dad is taking, it's commonly used for sarcoidosis and is given once weekly. Some tolerate it better than others. I had no problems, thankfully.

    Sarcoidosis is most commonly found in the lungs first. Skin is often affected.

    I learned the most if this disease by googling and reading from reputable sites.

    If he isn't getting good answers from his doctor, locate a good sarcoidosis specialist that close enough for him to travel. Mine is 4 hours away, for me it's worth it as most doctors in my smaller area aren't on top of the newest treatments and information. Ok, cluesless lol.

    Speaking from my own experience, sarcoidosis can be around for 18+ years and it may be a pain at times, I'm still here! 😊

    Keep supporting him and be understanding, no matter what his complaint is or how often he talks about it. That's so important and it sound to me you're on top of that!

    I have to add that prayers are answered and the good Lord has been with me from day one. 😊

    Best wishes,

    Deb

  • Granny1957
    Granny1957 katie410

    Posted

    I am so sorry to here about your dad this disease really sucks I have it in my lungs and behind my liver I wish I could tell you he going to be OK but I be lying all we can do is take it one day at time no cure yes a cold to us is really bad and beening sick takes alot out of us it just unbelievable I take it one day at a time and life to fullest the weather don't help you got million in one against you so when you have a good day it's a blessing give your dad a lot and support God bless you granny
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.