I was diagnosed with sarcoid 3 years ago.
Posted , 4 users are following.
I had a lung biopsy and it confirmed sarcoid. I was not put on any meds and symptoms disappeared. This August I had it flare up in my left eye. 3 eye doctors later I was told to go back to my pulmonary doctor to see if the sarcoid is anywhere else. Is there a way for them to find this out without another biopsy? I'm so tired of so many doctors wish there were specialist. Or are there? I live in the St. Louis MO. Area. I can't find support groups or anything. Ideas?
0 likes, 8 replies
chris0814 nancy61778
Posted
Hi Nancy,
I have had this for 15 months. It's now in my both eyes and my esaphugus. You need to have a PET scan to have verification of any red flair ups.
Most doctors ( Rhemotologist ) is who I see for all my Saricodsidis and the lung specialist.
They still just give you predizon for the most part.
I am on Remicad and steroids for the eyes as well.
Hope this helps
debie1966 chris0814
Posted
Do you mind if I ask what symptoms you have/had with the sarcoid being in your esphogaus?
Thank you,
Debie
chris0814 debie1966
Posted
I was coughing up blood and went to a GI that specializes in Sarcoid. They have done biopsies on the nodules and open tumor like bleeding ulcers.
There really is no more treatments. I am on what they fill will put it in a stagnant state.
debie1966 chris0814
Posted
Thanks Chris, I appreciate you writing me back and sharing. This disease, gooodness. I try to learn as much as I can. It amazes me how it attacks individuals so differently. Sorry you've had to go through this. I'm on remicade infusions, methotrexate and plaquenil. Take care and thanks again.
chris0814 debie1966
Posted
They took me off the methotrexate shots once a week 20mg. I was on it orally prior.
I have 6 more infusions of Remicad every 5 weeks.
gone frome 70mg of Prednisone to 20 daily.
debie1966 chris0814
Posted
Hi Chris,
That's high doses of prednisone, been there myself, I despise that medication because of its side effects. I gained so much weight. I was able to lose it twice though, thankfully. First time I lost 60lbs then ended up back on prednisone, gained that 60 and then some over a few years. Got off it again and lost just over 100lbs. Sigh. I'm glad you were able to wean down to 20mg.
Take care!
Deb
debie1966 nancy61778
Posted
Hi Nancy,
Are you in Facebook? There are some wonderful support groups on there, search by sarcoidosis and you'll find them. Also check the sarcoidosis foundation website, I'm pretty sure they have a physicians directory. There are "sarcoidosis specialists", I see one of the top in our nation. I feel blessed to have him.
I know a PET scan will show all nodules and where they are however, I believe a biopsy is still required for a definite diagnosis in 'most' areas. Not always though. I've had 2 biopsies, lungs and bone marrow. I know have sarcoidosis in my brain which I will not be having a biopsy done, because of my medical problems and test results my doctors are confident I have hypothalamic sarcoidosis. What I'm trying to say is that in some cases, if you have a well documented case of sarcoidosis and have new symptoms arise, a biopsy may not be required for your doctor to give you a confident diagnosis.
Unfortunately though, I've learned that having my sarc specialist is amazing but when it comes to the different medical issues sarc causes, I have to see those individual specialists. So like you, I'm tired of having so many doctors.
I wish you the best of luck. Please feel free to ask me anything or find me on Facebook ... I'm Debie Eakle Brethauer there. I've been fighting sarcoidosis since 1999.
Take care,
Deb
Helen219 nancy61778
Posted