Continued Journey

[FiArt12X]

Day +43 from my BMT. Day 35 is a bench mark day as is day 100. Cellcept had run its course on day 35. It is an effective medication with controlling GVHD (GraftVsHost Disease). I also had a switch from Tacrolimus to Sirolimus. Both of these meds help with the GVHD. However the Tacro was affecting my kidney function and may have been responsible for the increased edema. Siro is a little milder med.

Day 35 I noticed some sores in my mouth, mostly inside of the lips. As a result my appointment was changed on day 40 from a simple blood draw/labs to both labs and clinic. They wanted to look at and swab the sores. On day 39 surprise surprise a rash started to develop on my chest. Luckily I had the appointment set as these are both symptoms of GVHD. By the next day, appointment, the rash had spread significantly to my back, belly and face. As a result I was given two steroid creams. One a lesser percentage for the face and one for the body.

I already had an appointment set for day 41. Labs have shown most numbers are in the normal range. Kidney function is recovering well, red blood cells are still lagging but improving. The swab of the sores showed no virus so a medicated rinse was added, along with prednisone because my rash was spreading more. I’ve only been on these for two days and they do appear to be helping.

The smooth sailing has hit some choppy waters. I’ve been assured my the medical staff that they’ve seen this before and will get me through it. I’m confident they will.

[Newdawn Administrator]

You’ll know I’ve been following your journey FiArt and am sorry you’ve hit these issues but they sound like something staff experience and know how to tackle. Rashes can be so uncomfortable so best wishes for a swift resolution.

Hope you’re managing to keep emotionally buoyant. This is a tough gig but you’re doing really well with labs in range.

Stay strong and keep us updated.

Best wishes,

Newdawn

[FiArt12X in reply to Newdawn]

Yes, I’m pretty positive about things. The new meds and treatments seem to be working well. My medical team is very responsive and supportive giving me even more confidence.

[Stewie_1968]

That's great news with the bloods , is the rash slowing improving then ? and your feel ok Looks like your team is right on the ball which is reassuring

Best wishes

Stewie

[FiArt12X in reply to Stewie_1968]

Rash on the upper body is improving as well as mouth sores but legs have developed same rash. I expect the cream and oral steroids will take care of that rather quickly.