Hi I've just been diagnosed with sarcoidosis

Hi sharon

First of all - don't panic ...I know it's easy to say but seriously it will only make your symptoms worse.

I got dx nearly 4 years ago & I felt like my world had been turned upside down.

I'm a mum of 2 boys & I work full time & run my husbands business. My sarc is in my lungs although I reckon it's played a part in several other complaints like itching legs , rib pain etc.

Docs are in the main v uneducated about sarc.

My symptoms were coughing for 6-9 months & tight chest which was awful.

Sarc waxed & wein so if your having a spate of it you know that it will hopefully subside sooner or later.

Everyone's experience is different but if you want my opinion you need to eat well, keep as fit as you possibly can & stay away from germs (like in the gym) .

You have to listen to your body so if your tired just take rest etc etc.

Ref the steroids - I've personally never taken them, the side effects can be harsh ... you should talk to your doc or another doc that actually knows about sarc before you decide but I didn't want to let them creep into my life but some people have no choice. If you are questioning whether to take them or not then I would say that you poss don't need them because if you really really needed them you would have taken them already.

Best thing for sarc is excercise it helps stretch the lungs & increase volume - I train 3 times a week but not too much cardio & I never overdo it , if I feel tired I miss the next session - your body will tell you if you can do it or not.

I don't know if this is helpful or not but this site helped me at first.

Once you get over the shock & living with Sarc you will hopefully get back to doing the normal things that you always did before just maybe at a new pace that suits your body for now.

Enjoy your life, get on with it & stay positive - x

Steroids is the go to drug for Sarcoidosis for 99%

Of all physicians. Have you seen a puliminolgist?

My side affects turned me into a type 2 diabetic

I have also been on 3 different types of inhalers

Methotrexate and now on Remicad infusions.

I see a real good Rhemotologist once a month.

This Disease can go away with the steroids or not depends on your body. I have been sick with this for 17 months. Not a pleasant day to day way to live right now.

Chris

Hi Sharon

I have recently been diagnosed with sarc but took a long time to get diagnosed. Eventually when I saw a specialist he recommended steroids as it was in my lungs. I actually asked the question to see if I could avoid steroids but he said to take them to avoid damage to my lungs . He did say most patients don't need steroids . I also at some point had sarc which interfered with my heart and had a pace maker fitted. I also have had some small seizures causing blank staring also possible sarc. This disease can get everywhere, I have it in my lymph nodes. I am a positive person but have to go with the specialist in his opinion to stop further damage and take the steroids. Good luck

I have sarc in my legs. I took the steroids as prescribed. I was back on my feet in days. I fear it will return but I am 5 years clear. As for long lasting effects of steroids I don't seem to have any. I think it's the only thing that works.

Stay as well as poss.

Terry

I was diagnosed with pulmonary sarcoidosis last March. Have been on steroids since. I am now down to 4mgs once daily. They have really helped and even though they are side effects I would be lost without them.

I think you should get a second opinion or find a medical professional who knows about sarcoidosis.

Best of Luck hope you feel better soon.

Polly.

PS it is best to take your steroids in the morning rather than 4 times a day. As it will definitely affect your sleep.