I am stable after 3 and a half years

Day 1257.

I saw my rheumatologist this week and she told me that they now consider the sarcoidosis stable and inactive.

I kind of knew that already based on the PET scan, but it's nice to hear it from a medical professional. This means we will slowly start to reduce some medication and monitor things to make sure the sarcoidosis does not return.

First of all, I am stopping Methotrexate and Folic Acid to give my liver a break. I can do this immediately. Hooray! Methotrexate has a 3 month half life. We will monitor this for 3 to 6 months through my regular blood tests to ensure we can catch it if the sarcoidosis becomes active again due to this change.

Longer term

After 6 months we will start to taper Prednisone down from the current 5 mg to hopefully 0 mg. The taper schedule is still to be determined, but we will likely start by dropping it by 0.5 mg.

Some of my friends are currently going through Prednisone tapers, and it does not sound fun. Terrible fatigue, dizziness and other things.

From there we will slowly reduce Infliximab by increasing the time between infusions. Currently I am having one every 6 weeks. We will extend it to 8 weeks, then 10 weeks, and so on.

The doctor said that all going well after about 5 years I will be off all medication (except heart medication). The idea of this makes me very happy. But also a bit nervous.

Cardiac sarcoidosis can either be acute or chronic. Acute means there is an initial period of activity after which the disease burns itself out and patients can go back to normal. Chronic means that inflammation is ongoing and returns as soon as treatment is stopped.

It won't be clear which boat I am in until we try to reduce the immune suppression medication. I wish there was a way to know this without this test and learn approach, but that is what you get for having a rare disease.

For now I am pleased and focusing on the present.