Update - GVHD
 

Hello

I was just diagnosed with mild chronic GVHD and start prednisone tomorrow. GVHD has been suspected since soon after the transplant but nothing was clear-cut.

My blood work (esophils tripled) resolved the question once we started tapering the tacrolimus. Now we are increasing it again.

I have to use a glucometer four times a day and I have insulin if needed. We'll keep monitoring to ensure I don't develop diabetes. I am also starting anti-osteoporosis treatment to protect me bones. These are rare potential side effects. If it's rare, I tend to get it so let's hope this time is different!

Let's hope I start feeling better soon.

Good luck Michelle. Post-transplant treatment requires physicians and patients to seek the perfect balance of drugs and doses, something that's just as individual as the diseases we started with.

What did the doctor say when your ankles and feet started swelling? Is that still an issue?

I hope you feel better and better as your transplant birthday approaches.

swelling feet and ankles
 

Thanks so much for your good wishes!

The doctor has not said much about the swelling. I now have compression socks and was wearing them when I saw her Friday. It could be the tacrolimus, middle age, etc. Who knows? She noticed how swollen they were even with the socks, although it was actually a good day for them.

I bought new running shoes today and that should help my knee and foot pain. The running shoes and sandals are the only shoes I can wear right now. If I wear the socks I can sometimes wear other shoes.

We'll see what the prednisone does for me. There are likely symptoms I have grown accustomed to that may improve with the medication.

Best wishes,
Michelle

another update on GVHD
 

First of all I had my first rebirth-day on October 11 and I am 100% donor:)

I felt great on the Prednisone - no more dry mouth, eyes, skin, swelling ankles. I felt less fatigue and actually had some energy. However, when I started tapering off the Prednisone, the symptoms came back. My oncologist is adding another immunosupressant (CellCept (mycophenolate mofetil) plus more anti-fungal medication in the hope that I can taper of the Prednisone.

I've been taking the Cellcept for a few days now and don't feel better yet.

I'll just have to wait and see what happens.

Michelle,

It's definitely a balancing act, and this is where the doctor's experience can pay off. Even then, it seems to require some experimentation to find the right mix, especially when you're trying to reduce your prednisone.

I had some pretty dramatic swelling of my ankles from my GVHD meds post trans for PNH. I no longer take Rap/ Tac or steroids, just Nilotinib which is usually for leukemia. It seems to help w/ GVHD in some cases. But of course it has side effects and some insurance co's/providers may not pay for it since GVHD can be treated w/ less expensive drugs. Good luck in your treatment