Sarcoidosis

[rigge]

Hi, my husband was diagnosed last summer with Sarcoidosis and a lung ade of 80. How long can you live with this condition ?? He is 53. I would love to hear from survivors. Thank you !!

[sarcoid123]

I don't think there are many people with sarcoidosis on this Healthunlocked blog site, hence no other replies so far.

Please know that sarcoidosis can go away, not to return within a year or two.

Quote from NHS site "Most people with sarcoidosis develop symptoms suddenly, but they usually clear within a few months or years and the condition doesn't come back. This is known as acute sarcoidosis."

I have what is called chronic (long term) sarcoidosis in my lungs and have had it since I was 35; I am now nearly 72 and still going strong! There is lots of information on the web.

Please be aware that if you have sarcoidosis you should not take Vitamin D supplements! There are explanations on the web, but most are a bit difficult to understand!

[rigge in reply to sarcoid123]

Oh my gosh, thank you from the bottom of my heart for your reply. I will probably read it every day to put my mind at ease. I have been married to my husband for 27 years and I have been so terribly concerned about him. He is my life and I am so glad to see someone has lived with it for almost 30 years. Thank you !! Thank you !! Thank you !!

[Nhaamor51 in reply to rigge]

Hi,

I'm sorry that it looks like you are getting no replies. I was first diagnosed in 1992 after going to an Urgent Care facility for flu like symptoms. The initially diagnosed me with pneumonia but called me a week later and said I needed to see a specialist right away because I had either Lyphoma or Sarcoidosis. After a few week of tests and multiple biopsies it was finally confirmed Sarcoid. I was place on a high dose steroid which they tapered over the next six weeks. Over the next 20 years I graduated from Nirsing school, took care of my family (8 children) was a foster parent to special medical needy infants and just lived my life. Unfortunately what I did not realize is that I was having problems with the Sarcoid at least over the last ten years. I now have liver problems, dry eyes and mouth, also pretty severe vaginal dryness. I saw a ENT specialist who said I have it in my nasal passages. I am in constant pain from my liver. I do not take prednisone because I believe it will cause more problems then it will help. My rheumatologist has me on Remicade infusions every 4-5 weeks. It has definitely helped with the joint pain.

That's my story pretty much. I hope this helps you and your husband. I also have been married for 31 years and at times (like now) he makes me crazy I would not trade him for anything. I think one of the biggest problems with this disease is that other people just cannot understand how poorly you feel. You always get but you look so good. It's an invisible disease and therefore you feel like your credibility is on the line. So you suffer in silence. I have to get ready for an MRI of my liver so gotta go. Take care of each other and if you have any other questions don't be afraid to ask.

[rigge]

Thank you so much ! He had had Sarcoids for 1 year now. We take each day as it comes. One day at a time.

[Denram]

Rigge

Hi. I have just joined this forum ( 10 minutes ago to be precise !! ) having been on other ones for a few years.

I was diagnosed back in July 1990 and been under the care of the Royal Brompton ever since.

It has affected most bits of me in some way so I have developed ways of managing, usually by going a bit slower and taking more care.

I found that it affected organs so that things became less effective e.g. my heart which resulted in a recent operation for a Defibulator from the Royal Marsden hospital.

I believe that as long as you take your meds on time and never over do things you can live as normal life as everyone else.

Cheers Dennis

[Hidden]

I know that this is an old post. Just wanted to add if you're still there that I have had Sarc for over 30 years now. It is sometimes hard to cope with walking in cold weather, especially uphill ! BUT I am often fitter than my contemporaries who lock themselves away and do nothing. Keeping active - to the best of YOUR OWN ability seems to work for me and others with this nasty condition.