- Location
- Upstate NY
Hello, I was diagnosed with Crohn's in February 2014. I've been on aza since October 2014 (nearly 7 months). I weigh about 105 lb so I was on a 100mg dose up until last month when blood tests showed that both my 6-TG and 6-MMP levels were too high. My doctor reduced my dose to 75mg. I am also on 4G of Pentasa daily.
The thing is, I'm trying to figure out if the aza is even helping me.
The first time I was tested for ESR was in September 2014 (my last GI didn't seem to believe in blood tests, I wish I had a comparison from when I was very ill and from when I stopped entocort but oh well) and it was 23. The doctor told me this is "moderately elevated" using a scale of 0-20. It has stayed steady at 23 since then.
I had a CT at the end of February 2015 (4 months on aza) which still showed inflammation in my terminal ileum, which is the same result as my past two CTs (January and Feb 2014, before I was on any meds at all). I do not know if the inflammation physically has decreased in size.
Symptom-wise, I guess I've been fortunate to not have severe symptoms despite my GI telling me my disease looked "moderate to severe" based on scopes in February 2014. My bowel movements have always been fairly normal except during an acute flare up, of which I've had 3. My main daily symptom is LRQ pain, which ranges from a dull ache to considerable cramping and pinching pains. In March 2014 (5 months on aza) I experienced an extremely bad flare up with symptoms worse than those before my initial diagnosis. This lasted 4 days.
Overall, I think I feel marginally better than I did before I started the aza... maybe? Or maybe I'm just used to the pain and fatigue.
I have a GI appt on Friday. I will certainly ask his opinion, but if this was you, would you consider switching to a biologic? I mean, I could be feeling worse, but I also could be feeling better. Is it unrealistic to expect to be symptom-free on these heavy meds? I guess I don't know if I am just expected to feel slightly-to-moderately crappy for the rest of my life. Thanks.
The thing is, I'm trying to figure out if the aza is even helping me.
The first time I was tested for ESR was in September 2014 (my last GI didn't seem to believe in blood tests, I wish I had a comparison from when I was very ill and from when I stopped entocort but oh well) and it was 23. The doctor told me this is "moderately elevated" using a scale of 0-20. It has stayed steady at 23 since then.
I had a CT at the end of February 2015 (4 months on aza) which still showed inflammation in my terminal ileum, which is the same result as my past two CTs (January and Feb 2014, before I was on any meds at all). I do not know if the inflammation physically has decreased in size.
Symptom-wise, I guess I've been fortunate to not have severe symptoms despite my GI telling me my disease looked "moderate to severe" based on scopes in February 2014. My bowel movements have always been fairly normal except during an acute flare up, of which I've had 3. My main daily symptom is LRQ pain, which ranges from a dull ache to considerable cramping and pinching pains. In March 2014 (5 months on aza) I experienced an extremely bad flare up with symptoms worse than those before my initial diagnosis. This lasted 4 days.
Overall, I think I feel marginally better than I did before I started the aza... maybe? Or maybe I'm just used to the pain and fatigue.
I have a GI appt on Friday. I will certainly ask his opinion, but if this was you, would you consider switching to a biologic? I mean, I could be feeling worse, but I also could be feeling better. Is it unrealistic to expect to be symptom-free on these heavy meds? I guess I don't know if I am just expected to feel slightly-to-moderately crappy for the rest of my life. Thanks.
