Hi @jenmkr63 It’s quite amazing what our bodies can go through and overcome, isn’t it? From experience, it can take a good year or so to start feeling appreciably better…to the point where you start believing! Finally being off all the meds also makes a huge difference.

I was on my immunosuppressant for 2.5 years and with that I was also on 2 antibiotics, antifungal, antivirals and other meds until I tapered off the Tacro. That went up and down a bit and then eventually off. I did start my vaccinations before that though, which is important. Compared to what I went through, I really thought I felt great! But when I was finally off everything, wowzeeee. Game changer!

I know the irritation you feel when people keep asking, “how are you” every day. You simply don’t know! My husband did that too and I tried to not get impatient with the daily question. It’s so difficult to get across that some days are stellar and then we over-do…the next 3 days it’s all you can do to drag your bones out of bed in the morning.
It gets better!!! Your first year is the toughest so just keep doing and listen to your body. Four years later, I feel like nothing ever happened.

In regards to the tacro ointment. It wouldn’t hurt to keep up with the daily applications for awhile. I was told to use it for weeks beyond when the area healed. It works slowly but does wonders for keeping the inflammation under control.
Did you mention the sores in your mouth to your bmt team? There is a great steroid mouthrinse called Dexamethasone. (Picture below) The instructions are to take .5ml Am and Pm. Rinse for 30 seconds only, then spit it out. It’s amazing how well it worked on my mouth sores.

I also needed to use the tacro ointment off label and apply it to the areas on my tongue. It can be taken concurrently with the Dexa mouthrinse. Talk to your doctor! You don’t have to suffer!
We have been given a second chance with life. Yes, it comes with some potential side effects and risks. But we are here! We’re living our lives and for me, I’m relishing every day.
The keys are remaining flexible, keeping sense of humor and having a sense of adventure. Because no two days are alike. 😅