Mild Sarcoidosis

[Goldfinch16]

Just joined this platform because I was diagnosed with sarcoidosis over a year ago because of inflammation in my ankles. Rheumatologist put me on methotrexate and it worked great. I reduced the meds to half after almost a year of taking full prescription,and told doc I did. He said ok keep up with that then. Well I took it further and recently lowered medication and no symptoms. Not sure if I even have sarcoidosis or it’s in remission possibly? My rheumatologist says I do even though all test ie lungs, eyes and heart fortunately came back normal. Anyone else have mild sarcoidosis?? Would like to stop meds if it’s in remission. I guess my question is has anyone gone on and off of methotrexate, and if so, is it dangerous to stop and start?

[summer32A]

It could be the drugs keeping it in remission

[AgedCrone]

Listen to your doctor’s advice…….you don’t want to find that the Mtx is keeping you comfortable …..then suddenly doesn’t working if you keep stopping & starting it.I took it regularly for years……then all of a sudden it stopped working & I relapsed big time.

If it ain’t broke- don’t try to fix it.

[Goldfinch16 in reply to AgedCrone]

Yes ok god to consider this

[Biofreak]

Hi Goldfinch. Sarcoidosis mostly affects the lungs or heart. Are you also a member of the British Lung Foundation part of healthy locked? The BLF have a lot of information about sarcoidosis.

[Goldfinch16 in reply to Biofreak]

Thank you I will look into that

[Biofreak in reply to Goldfinch16]

There's also a group called Sarcoidosis UK. I think the way Sarcoidosis presents itself at first is inflammation and red blotches in the lower legs. That's caused by your immune system reacting to the sarcoidosis infection and creating inflammation. There are different treatments and sometimes immunosuppressants are prescribed (like methotrexate). Sometimes it clears up without and never comes back. The only reason I know this is because my husband had it many years ago. He had a bumpy rash on his legs but a CT scan and x-ray showed a shadow on his lungs and he was breathless. His treatment was inhalers and a course of steroids but after this treatment the shadows disappeared and the treatment discontinued. It can be chronic though and so I would ask your rheumatologist more questions about the type you have.

[Goldfinch16]

Yes possibly, thanks