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My husband is stage 4 Sarcoidosis.

Posted , 6 users are following.

Mrs.L386
Mrs.L386

He's on oxygen 24 hrs. a day and doesn't have any energy. He gets winded after 2 or 3 steps, so he almost lives on the sofa in front of the TV. He's young, early 50's and very depressed most of the time. It seems the Dr.s say there is nothing they can do for him. How do we cope with this?

0 likes, 13 replies

13 Replies

  • tangles
    tangles Mrs.L386

    Posted

    Hi

    Is he on steriods at all?

    Have you discussed ventolin with his doctors?

    Medications are very important I hope the doctors are taking the right steps.

    Regards

    Tangles

    • Mrs.L386
      Mrs.L386 tangles

      Posted

      tangles - Only sometimes he's on steriods. He's seen the same pulmonagolists for about 11 yrs. They say there is nothing that can be done. He's on many meds. at this time. A lung transplant is not possible for him.

    • Mrs.L386
      Mrs.L386 tangles

      Posted

      Can you tell me what Ventolin is? A drug? We are not familiar with it.
    • zss
      zss Mrs.L386

      Posted

      Please don't tell me that is all he's ever had these past 11 years.

  • marie82928
    marie82928 Mrs.L386

    Posted

    I've had sarcoidosis for about 4 years now.  I am currently on prednisone.  This is the longest and strongest dosage I've had.  40 mg for one month; 20 mg for one month; 10 mg for one month.  The side effects have affected me this time around.  I now have thrush in my mouth and am taking a med for that too.  The thrush is associated with people who have weakened auto immune systems.

     I would recommend seeing another doctor.  He needs to get mobile, no matter how bad he feels.  Another doc may see something your longtime doc has overlooked.  Good luck to both you and your husband.  

    • Mrs.L386
      Mrs.L386 marie82928

      Posted

      We supposedly have a "super" doc. We don't know where else to look for one.

  • tangles
    tangles Mrs.L386

    Posted

    I was on 60mg of steroids daily. For two years!!!

    An incrediabily high does for what I read on this site.

    However they believed i was about to die so what to hell.

    That strong dose for such a long time saved me from the grave.

    Why not go for it.

    30 year later I am still here because the doctor had a go!!!

    Change doctors and demand action not words.

    Regards

    Tangles

    • kenny24313
      kenny24313 tangles

      Posted

      Can I assume that it was "pulmonary Sarc" that afforded you with your "death certificate" back then? I am currently where you were 30yrs ago. Visited hospital back in March 2016 and was handed my certificates and sent home to rest under Paliative care. I did not accept the "certficate" and did a lot better on 50mg Prednisone.. was able to come off O2 for a while and then "flares" sent me right back in the duldrums.. I will bump my pred back to 50mg and keep it there.. Will deal with the weight gain by not eating after 6pm..

      I went from 175lbs to 204.. in few months.. only side effect for me.

      Thanks for reponding to Mrs.l386.. Otherwise I would not have the wisdom to stop "tapering" off to quickly. I have a desire beat this evil disease.

      Regards,

      Kenny

    • tangles
      tangles kenny24313

      Posted

      Hi Kenny

      Yes it was pulmonary sarcoid.

      I was on 10-20mg and no improvments. I live in Australia, the doctor contacted a medical friend in the USA.

      They said no where near enough up it to 60mg and keep it there till you see some improvements. After two years no improvements. So the slowy took me of the dose. 12-18 months it took to get me down again.

      During the coming down stage it drank endless amounts of coffee.

      Then the reports for no real reason started to improve. Was two years on high dose or the coffee? Or combo of both?

      Yes weight gain is an issue and other items as well but I am here now alive and enjoying life to the max.

      Great to hear you are going to give it a go.

      I hope it helps MrsL386 as well.

      Keep up the GOOD FIGHT.

      Tangles

    • zss
      zss kenny24313

      Posted

      Kenny, most of your weight gain is mostly fluid. Once you start tapering off, you will end up running to the toilet frequently as it all drains away.
    • kenny24313
      kenny24313 zss

      Posted

      Yes, I concede, but I it would be nice to spead it around and not just in my stomach.. LOL.. 
  • tangles
    tangles Mrs.L386

    Posted

    Hi

    Ventolin is a spray you inhale to open up your airways. Commonly used by people suffering ashma.

    "Ventolin inhaler complete. 100 micrograms. Allen and Hanburys. Division of GlaxoSmithKline".

    This med is not a cure but makes breathing much easier and as such improves your quality of life.

    It has helped me.

    Hope this helps

    Tangles

    • Mrs.L386
      Mrs.L386 tangles

      Posted

      He has used inhalers before, but they did not help. I fear there is nothing left to do or try.  Mrs.L386
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