Today Ryleigh had her Remicade treatment. It was a tiring day for all of us as we got little sleep the night before because of our second adventure at the emergency room.
Gratefully, Ryleigh’s own doctor was on today and I must say I was relieved to see him. He is experienced and knowledgable and knows Ryleigh very well. Last night, the fellow who was attending the emergency made some judgements about Ryleigh that were incorrect. Today Dr. Barker could identify that Ryleigh was experiencing another flare of her disease. He listened to us and more importantly respected what Ryleigh had to say about her pain, her feelings, and her experiences the days. Such a relief not to be in “convince the doctor mode”!
Ryleigh is definitely spiraling toward full flare up again. Dr. Barker said this will be the defining time about what helps stop the flares and brings things under control. Her prednisone was tapered on Saturday and symptoms started on Sunday and have been getting progressively worse. He said it is worth trying the Remicade one more time — this will let us know if it is the Remicade or Prednisone that has helped manage things for the last 10 days. Ryleigh is confident that the Remicade is not working….she is determined that it is the Prednisone that is helping her. Dr. Barker believes the same thing — he said if the Remicade was going to work it would have shown some success in the last treatments and he feels it hasn’t but it would not hurt to try it again. I don’t want to believe that the Remicade is not working. Mostly, because I don’t want to admit what will need to happen if this treatment does not work.
Here is my concern:
Ryleigh has had three separate times using prednisone – these are the times that she has had some relief albeit short. She cannot be on the steroid this much – the side effects are too hard on her body – they can cause growth issues, bone damage, damage to organs like the kidneys. Long term this can be detrimental. That is why it is a short term fix.
If Remicade does not work then that informs us that her body does not respond to biologic treatment. She would not be a candidate for the next level of biologic called Humera. It is used when medications like Remicade may work for a period of time and then not work successfully. So, Humera will not be a choice for Ryleigh.
Methetrexate was a possible choice but Dr. Barker explained that it is most helpful for issues that are not like Ryleigh’s. Right now her disease is similar to colitis because the diseased area that is inflamed currently is in the large intestine. Methetrexate does not typically work for this type of inflammation.
So, the next option will be surgery. Dr. Barker said we will know if the Remicade will work in the next 24-72 hours. By Friday we should have some idea of whether the Remicade is working successfully and we will be connecting with the GI team and let them know what is happening. By the time the weekend comes and Ryleigh is not better then surgery will be the next option discussed. I did not have it in me to talk with Dr. Barker about the different types or how surgery would occur. I will cross that bridge if needed later – of course I will research all I can so I will be knowledgeable about the types of surgery. It is so scary because they will be removing part or all of her large intestine. Hard to think about or fathom.
So again we are waiting. Tonight Ryleigh was in so much pain with her gut — she asked for Tylenol which she has not asked for since the hospital. She has spent a significant amount of time in the bathroom and is experiencing bleeding again from her bowel. We will wait and see how tomorrow goes….my fingers are crossed.