It turns out that the pain in my quads is probably not due to over-exercise but is instead caused by a new appearance of graft versus host disease, this time in my muscles.
When I saw my nurse practitioner, Melissa Cochran, yesterday, she said that such intense and prolonged pain didn't sound like it had come from an exercise injury, and that is my thought too. It is news to me, however, that GVHD can appear just like that, nearly five years after transplant, but I guess I shouldn't be surprised given what I am reading on friends' blogs.
Melissa discussed with Dr. Alyea the possibility of raising my prednisone to help diminish the inflammation, but he had left for the day today before the decision was final.
I am currently on four milligrams per day, and asked if I would be upping it to five. She said no, 10. Sigh. I would do anything to stop the pain that brought tears to my eyes this morning when I could hardly get out of bed, but still, the downsides are notable, including lowered resistance to illness and weakening of muscles.
I felt much better after ultrasound, heat and massage at physical therapy today, and Melissa said that if I still felt better in the morning, I could keep the prednisone at its current dose. But if the pain is severe again, I will need to take the 10.
Also on the pain front, I saw the Boston dentist, Dr. Treister, yesterday, and he said he really doesn't know what is wrong with the tooth that is causing me so much trouble. He suggested getting a consult about a possible root canal, so I set that up for next Tuesday. Sigh again. The only funny thing that happened yesterday is when I called my local dentist's office and got the same receptionist I have called over and over during the past week.
I was in a busy coffee shop and could hardly hear her when I asked for a referral to an endodontist's office. "Are you in pain?" she asked. I said I was. Her question took me aback for a minute, because I thought she had asked, "Are you insane?" I told her what I had thought she said, and she laughed and said I was actually being a good sport about the whole thing.
My visits yesterday included a stop at my dermatologist's office. She biopsied a spot on the side of my neck that looks like it might be a basal cell carcinoma that will need more Mohs surgery.
Meanwhile, it seems that I am actually allergic to penicillin, even though I took a lengthy "challenge" just last month to test if I still had a childhood allergy to the antibiotic. I passed the test and then proceeded to tell my dentist he could give me amoxicillin for an infection I have in my gum. Today I noticed that my arm had broken out, and then my legs, and then my stomach. Well, you get the idea. I took some Benadryl and can barely keep my eyes open long enough to write this.
2 comments:
Try to keep the pred low if you can. I'm an example of what the drug does to your muscles. If you have to up it, see if you can reduce quickly. And you are insane. Who wouldn't be after the continuous trials of this disease
I get a lot of muscle pain at times and recently learned it's because of low potassium. Hope the pain diminishes for you without having to up the prednisone.
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