1. Community
  2. Chest and lungs
  3. Sarcoidosis

Sarcoidosis remission? Myth?

Posted , 7 users are following.

gustav
gustav

I've suffered with sarcoid since 2007. Since December 1st 2014, I no longer take prednisolone. My consultant feels that the disease has "melted away". From my understanding, this simply means remission. Incidentally, I still suffer with extreme night seats every night and am still breathless upon exertion.

1 like, 13 replies

13 Replies

  • donelle
    donelle gustav

    Posted

    Yes.. night sweats. Breathless upon exertion. Sounds like your in remission.
  • Nickademus
    Nickademus gustav

    Posted

    I too still get night sweats and breathlessness. Bottom line is we know our bodies far better than the medics do. Plus they dont know all that much about Sarcoidosis and its different in everyone. How can you be symptomatic and be in remission? Problem is we dont follow a set pattern or text books, as we are human
    • gustav
      gustav Nickademus

      Posted

      A like mind! My consultant told me at the outset that the condition would melt away or burn itself out in 18 months or so. That was in 2007! I have had liver scans which have shown scarring of the liver which he dismissed as probably not sarcoid, when it's well known that the disease affects the liver too. I also wonder if I'm suffering from steroid withdrawal too. On a bad day like today, every joint seems to ache. Seeing my GP tomorrow for some follow-up bloods. I wish you well.
    • gustav
      gustav Nickademus

      Posted

      I belong to a group on twitter based in the US called Caring Hands Sarcoid. They would certainly endorse your comments.
    • donelle
      donelle gustav

      Posted

      I will join it today. Im on twitter. Thanks mate
    • Nickademus
      Nickademus gustav

      Posted

      Sorry youre having a bad day. We all get them. I have to remember when its a bad day that there are more better ones between the bad days than they used to be. I too and going through steroid withdrawl. Theyve taken me off them so they can measure my breathing and get a reading with and wothout steroids. When I was in clinc before Christmas I saw a Registrar as the Consultant was absent. SHe was so throrough and explained loads of things. My calcium and Vit D is now low but I dont hit a magic number so I cant have treatment. Ive got to get worse first. However it was her that said to me I know my  body better than she does. I did wonder if she realised she was betraying her Profession but at least she was realistic. I refuse to be a statistic, a financial statistic to anyone. We are people, with a condition that we have to live with and manage - somedays better than others- and if we need treatment then we need treatment. Im not sorry it affects my GP's budget.

      Sorry for being on my soapbox but it hacks me off that someone who can read text books lacks compassion realism and needs to see the person not the condition

  • bert73173
    bert73173 gustav

    Posted

    Hello all.  My wife has had Sarcoidosis for the last 25 years.  We go to a support group at Mt. Sinai Hospital in NYC.  They have treated over 18,000 Sarcoid patients there and it has been the home of Dr. Al Tierstein, until his death some 3 years ago.

    She takes medicine to help with her breathing but I dare say that it has not been inflammed for over 5 years now.  She wrote the booklet for all new patients being treated at the clinic and it is called "Its ony Sarcoidosis"..I am not belitteling the disease as there are a percentage of patients who die from it and some have been celebrities over here.  We have been taught that about 50% of the patients will have Sarcoid go away within one year of onset.  Seh is in the cronic group.

    The most widely prescribed medicine is Prednisone and she has been on it a half dozen times in the past. 

    At meetings every-ther-month, we find that most of the patients have been mis-diagnosed in the past.  People have even been told that they have cancer that is inoperable.  Need to find a physician, and preferably a team, who specialize in the disease.  She was scared in the past when the radiologists kept asking for repeat XRays and did not know what a hylar adenopathy looked like.

    Its a scary disease.  No one has figures out the cause, even after a large government based study by NIH.  There are many medications that are given to trat it and they keep finding new treatments over time.

    There seems to be some genetic aspect to it as well as an environmental trigger that causes it's onset.

    Let me know if I can be of help to fellow sufferers in Europe.

    N

    • fizgo7601
      fizgo7601 bert73173

      Posted

      Hi  and thank you for sharing. My husband has been diagnosed with Sarcoidosis as a process of elimination and it scary.  He has to go through more tests but I was hoping to read your wife's booklet. Do you know where I can find it? Thank you for your encouraging post and I pray she continues with good health as I pray everyone reading does as well. 

  • robert85450
    robert85450 gustav

    Edited

    I was put in remission like 6 years ago. Then February of 2021 i got the pfizer vaccine. 3 months later are started to experience extreme dizziness and vertigo. This whole time I blamed it on the shot. I went to see a ear, nose and throat doctor and he said I had menieres disease. Another physician said to try medical marijuana. It sorta worked for awhile. Then 3 months ago out of the blue, no more Vertigo. Until a week ago it started again, this time with headaches and a pain behind my eye. My hearing is bad, the tinnitus is killing me. All my muscles and joints hurt. I have spasms and cramping a lot. Does anyone else have all these issues? I am definitely gonna have to call a new pulmonary doctor, being that mine left the country...

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.