Because I have been having such a hard time, I haven’t written as much about my improvement as I could have. People are confused and I am getting a lot of questions, so let me explain:
- My eyes, mouth and liver are stable: this is fine for now. I do have uncomfortable symptoms and I miss being able to eat good food, but these things do not severely impact my quality of life.
- My scleroderma is significantly improved. This is likely due to the combination of photopheresis and IL2. The prednisone plays a large role in getting the inflammation under control, then the ideal is to continue the other treatments to keep things under control and, once you are stable and improving, to begin tapering the prednisone. I have tapered from 50 mg daily to 50 mg every other day. I can definitely tell the difference – I am much less swollen and I’m getting a tiny bit more sleep. That said, my doctors want to stay at 50 mg every other day for awhile. That’s still a lot. They won’t really give me an estimate, which I can’t blame them for because every time we think we know what is going on it turns out we don’t.
- My breathing and range of motion are still nowhere close to normal, but they have both improved significantly and I am regaining some abilities. I have lost another 5-8ish lbs of fluid and kept it off but seem to be at another plateau.
- My goal is to stay on this dose of prednisone for a few months (????) then taper the prednisone to a very low dose. I would like to taper completely off of it but I don’t think I will be able to try that for a long time. Meanwhile, I will continue photopheresis and IL2 injections as they seem to be working and I am improving.
- I am still in a pretty rough place physically. To give you an idea, any doctor who saw me before is like “you are SO much better WOW” but all new doctors I meet, even the ones who specialize in GVHD, are HORRIFIED at the current severity.
Like I said, I am improving. However, that doesn’t remove the uncertainty in my life. I’ve been all the way off prednisone before. I’ve been on several tapers and during each one thought it would be the last. It is hard for me to trust that things will continue to go well and that nothing new will pop up. Unfortunately, no doctor can tell me I’m wrong and that is my reality. This uncertainty plays a large role in why these treatments are so difficult – am I doing this just to have to do it again and again and again? How much is enough? That’s a big, scary question that people run from. Unfortunately, I can’t run from it because I am suffering immensely. Do not worry that I will make any rash decisions – I am improving, doing all of my therapies, and I have some hope. But I also have that fear that I will never have a quality of life that is acceptable to me. Those feelings exist simultaneously.
^Ok it looks more aggravated here but that is actually new skin/blood. When my scleroderma was at it’s worst, blood was not adequately perfusing to my skin. This meant that nothing would heal – it was months of every new wound being seemingly permanent.
^Basically it chilled like this for 3+ months before starting to heal.
PS I saw Michelle Obama on Wednesday and it was one of the only good days I have had in a long, long time. I happened to be feeling pretty well and bought tickets day-of and it was so worth every penny. Also, I’m finally showing y’all what I look like. This is halfway off the prednisone, so imagine me before 😂