Dealing with sarcoidosis - advice needed for a hard working dad

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My dad, aged 68 was diagnosed with sarcoidosis this summer. He was extremely ill, lost lots of weight and it got to a point where he could barely stand. 

Since being diagnosed he has been put on steroids, 40mg initially now down to 10mg.

Although he has improved from his worst point,  he has worrying dizzy spells, still seems tired and is unsteady on his feet.

My main concern is that by refusing to reduce his workload on his farm he will not allow his body to heal. He has about 100 sheep (this will be closer to 300 after the lambing season) and does most of the work himself. There is lots of heavy lifting and long hours (and dust when working indoors)

I feel that he has not realised the seriousness of his condition and just want to protect a father that we all love dearly.

Is he doing himself harm by continuing with all this work? 

Any advice would be greatly appreciated

Michael, Donegal, Ireland

 

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10 Replies

  • Posted

    Hi Michael, 

    I am from Limerick and a community nurse. I was diagnosed March 2016 but I had been I'll since December 2015. Like your Dad I was very I'll, the fatigue is indescribable and trying to explain how bad you feel is still very hard. My job is not at all as physical as your dads job and I was off for 12 months. I too was treated with steroids and spent 15 months on them. I am back to work full time now but I still feel tired. Your Dad will only make himself more I'll if he doesn't slow down or take a break for a while even though being a farmer is going to make that very hard. 

    When you have sarcoidosis you look fine and you do try to do more than you are able plus being steroids can be upsetting for ones mental health, I had to go to counselling as I was very angry and agitated due to the meds. 

    My advice is for him to slow down as sarcoidosis responds badly to stressful situations and only aggravates it more. 

    I hope this is helpful.

    Kind regards,

    Polly.

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    • Posted

      Thank you very much for your reply and for your advice. It is very helpful to hear from others with sarcoidosis

      The frustrating thing for us as a family is that our dad does need to work for financial reasons. He enjoys farming but there is no reason for him to do so much. We just want him to take better care of himself. Possibly the steroids is affecting his judgment too.

      I hope you are managing well being back at work and wish you all the best.

      Thanks again for your reply.

      Michael

      .

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    • Posted

      Please becareful of the steroids if your dad is on Prednisone it can cause more damage than good. My sarcoidios has infected my whole body including my eyes. I'm currently injecting myself with methotrexate which a chemo drug once a week and it has helped with my breathing and I use my wheelchair less. I'm here if you have any questions on signs or symptoms for your dad. Never be afraid to ask any question on this illness cause I know that everyones body is different and react differently then another.

      Keep your chin up. Prayers for you and your family.

      Your friend

      Gina

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    • Posted

      Thanks for your kind offer of support. I would be very wary of steroids too.

      I may well contact you again with further questions. Will have to see how he gets on over the next while.

      Good luck, Michael

       

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  • Posted

    Your dad is fine to work but should wear a mask to keep from breathing in the dust and sheep urine smell it will make him dizzy and I'll. I've been fighting sarcoidios for 30 year's and mine has only gotten worse some get better and then there's people like me a stage 4 who's doctors pretty much gave you on me cause there's nothing more they can do. I wish you and your family the best. And try to get your dad some helping hands with the farm if possible.

    Take care and I hope your dad gets well soon

    Gina

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    • Posted

      Thanks for your reply Gina. Good advice with the masks but I also feel that all that handling of strong animals can't be good for his body. He also does not need to continue farming for financial reasons so we really just want him to take a bit more care of himself.

      It can't be easy for you to have fought this disease for so long. I wish you all the best and thanks again for replying.

      Michal

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  • Posted

    Hello Michael, It started in December of 2012 and after about 6 months of not feeling well and losing about 50 pounds (23kg) I was diagnosed with Sarcoid. I was on steroids (off now). But I’m still on Humira injections and Methotrexate, (and other medications). I’ll probably be on them forever as my doctor says “those are your friends”. My my doctors said I was in remission about 2 years ago, but lately I’m feeling more tired. So this is more of a chronic disease rather than acute. Meaning it kinda always lets you know it’s there. My doctors alway tell me to try to get past the “tiredness” but it feels like your going in circles. If your faher is anything like me, you kind of want to do things yourself. Not for pride, but because “it’s what you do”. It gives you purpose. 

    People who haven’t experienced it (personally or within their family) really don’t understand. You father is lucky to have you. My doctor always tells me, if you can do it, go do it. Your body will tell you when to work and when to rest. My wife and kids always tell me to “go rest” or “they’ll take care of it”, and sometimes I insist on doing it myself. But sometimes I agree and let them take over. Depends on how I feel. 

    I'm a little younger than your dad, but if he feels inclined to continue, please don’t take that from him. Just continue to be there for him. I am pleased to know that my family is there for me when I need them. And it sounds like you’ll always be there for him.

    Wishing you and your father the BEST from New Orleans, Louisiana.

     

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    • Posted

      Hi Simon,

      Thanks for your good wishes and your advice. My dad is meeting his consultant tomorrow so looking forward for an update.

      We are certainly here for our Dad as he has always been for us. However I have a full time job and three young children so do not have too much time to help on the farm. We need him to continue at a level that is more manageable for everyone.

      Wishing you all the best in New Orleans. 

      Michael. 

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