Pednisone Savior...but what next?

[ThatsWhatSheSaid]

I don't know if you have read my story around here at all. I had rather unimpressive two-way scoping on May 31st (EGD and colonoscopy). I had a hiatal hernia and esophageal stricturing, and less than impressive inflammation in my colon according to my GI. So he did not believe that my numerous symptoms (joint pains, mouth sores, etc) were the result of crohns because the inflammation in my intestines wasn't very severe. Nonetheless, he put me on 40mg of Prednisone on Friday (which I did not pick up and start until Monday- 2 days ago).

Already my mouth sores are gone (I get them in the corners of my mouth, angular stomatitis) and the inflammation all over the rest of my body has greatly reduced. So obviously something is out of control that the prednisone knocks back in line. But what happens when I go off again if I am sitting with a doctor who does not believe that the crohns diagnosis I have explains my symptoms? I know I need to see someone else, but I don't even know when I can get in anywhere and I am on a wait list for Mayo Clinic.

 

[Jennifer]

That's a tough one. Staying on Prednisone the whole time while you wait doesn't sound ideal. Any chance of getting on Entocort instead? That you can be on long term without all the bad side effects that Pred has. Maybe suggest it to your GI. It could definitely be Crohn's that's causing all these other problems. I get those problems too and Entocort has pretty much knocked out my hip pain (I have arthritis from the Crohn's).

Do you know how much inflammation you had? Did he give you a number? Normal is around 0-4. Even when mine was at 9 I could feel it affecting me.

 

[ThatsWhatSheSaid]

Entocort made my heartrate skyrocket, so that is a no-go. The inflammation was in the colon and he said it was mild. What scale are you referencing? And is normal normal for a crohnie or for normal population?

 

[ThatsWhatSheSaid]

Oh and I have panic disorder too! So a resting heart rate that is sky high is no good!

 

[Jennifer]

Normal for the whole population including people with Crohn's who are in remission.

I meant your CRP level.

Colon you say? What about Asacol?

 

[ThatsWhatSheSaid]

I don't know what my CRP level was. Would they have checked that during the procedures? I am on Pentasa.

 

[ThatsWhatSheSaid]

Crabby, I called my GI's office and the last time my CRP was checked was in August of 2009 and my number was 0.5. So I guess it hasn't been checked since then. Should it be? Is it unusual that they wouldn't check it if I am having issues? I was diagnosed definitively in November of 2004 (so I guess the CRP was a ways after that).

 

[Jennifer]

Uh ya that should be checked fairly often before any treatment and maybe once a month or every few months to make sure the treatment is working and then occasionally once you're in remission (unless you're on certain meds like immune suppressants etc). Can't just go off your symptoms. That's a bad doctor. D:<

Edit: They may or may not see inflammation during certain procedures like scopes but they gotta know for sure by doing blood work. How dumb can they be?

 

[ThatsWhatSheSaid]

I don't know. It's so hard not to just burst into tears out of frustration. Which is dramatic, I know. I just want some help and I am so miserable and sick of being miserable. I am so broke that I am working full time as a paralegal and part time as an assistant store manager at the mall, and babysitting in between....because my medical bills are so high. But doing all of this obviously has a toll on my health. And I don't even have any help or answers. I normally swear like a sailor and majorly censor on this forum, but seriously, WTF????

 

[Jennifer]

I swear like a sailor too. Its so hard to censor yourself.

I think you need a new med. Try this one:

lol, I'm kidding. Seriously though have you tried going on Medicaid? http://www.medicaid.gov/