Prednisone dosage

[4&7]

Hi,
My story:
1. Came down with asymetrical swelling in knee and ankle, saw doc thought it was rheumatoid arthritis. sent me to RA doc.
2. In the meantime waiting for appointment, experienced nightly low grade fever, nausea, pain in back and sternum when swallowing food, fatigue, intestinal cramping.
3. RA doc ran blood, said probably not RA. Drained fluid from knee and injected steroid into knee. Gave steroid shot in butt, told me to see gastroenerologist.
4. Felt like a new person overnight.
5. Gasroenterologist did colonoscopy and endoscopy last Friday, 9th. Revealed ulcers in large colon, stomach ok, ulcers in esophagus she says are not related to Crohn's colitis diagnosis. Ulcers were biopsied.

Doc wants to start me on 40 mg. pred and sulfasalazine. Since my cortisone shot on Nov. 1st., I've been feeling good except for mild pain in my back when I swallow food.

Question: Why do I have to start on such a high dose of prednisone if I'm not having acute symptoms?

I have not started meds. yet. I called the doctor to see if I could start at a lower dose, and all I get to talk to is a receptionist that relays messages. She says if I don't my symptoms will relapse. I thought pred was to help with getting relapse under control. I'm not having all those symptoms anymore, and don't want to take the high pred dose.

:confused2:

 

[David]

Hi 4&7 and welcome to the community. I'm so sorry to hear about the troubles you've been having and your Crohn's Disease diagnosis. Hopefully we can clear some things up for you.

First off, Crohn's Disease is an incredibly serious, chronic inflammatory disease that, if improperly managed, will usually lead to terrible complications. It is absolutely imperative that they get your inflammation under control and work to heal your intestinal lining as soon as possible. That's the biggest reason they have you on the high dose prednisone -- to get that inflammation under control. And 40mg is a pretty standard dose for Crohn's patients. It's not about the acute symptoms. You're in this for the long haul now. Yes, you may be feeling pretty good but you need to get that smoldering inflammation under control otherwise it's going to end up a forest fire again.

With that said, I'm not a huge fan of you being just on Sulfasalazine once you taper off the prednisone. Did your GI mention you starting any other medications as well?

I'm happy to elaborate on any aspect of this.

Again, welcome to the community. We're here for you.

 

[4&7]

Hi,
Thank you for your reply.

No, right now just pred and sulfasalazine. At least for the next 2 months. I'll ask about other medications at my next doc appointment in 2 weeks.

To tell you the truth, I come and go on this site. It seems like a lot to take in. What drugs everyone is on, what to eat what not to eat. The types of symptoms and surgeries people have gone through. I read for a couple minutes, and then have to get off. I wonder what's in my future. I have 4 children, not much time for myself to begin with. No time for illness. That was evident a few weeks back when I was feeling ill. Family schedule fell apart!

I never take meds, not even for a cold. NyQuil gives me the bedspins. I just know pred is going to be a rough ride. I think diagnosis hasn't sunk in yet, or more accurately, I don't want it to.

 

[David]

It can be incredibly overwhelming, it really can. The next time you have a few minutes you may want to read this.

 

[ryanps]

Hi,
To tell you the truth, I come and go on this site. It seems like a lot to take in. What drugs everyone is on, what to eat what not to eat. The types of symptoms and surgeries people have gone through. I read for a couple minutes, and then have to get off.

This is what I find so frustrating about this disease. It is a disease of trial and error. I kept comparing myself to everyone else. I would say, so and so is on Humira and doing great. I should try that. Then it was, so and so is on Cimzia and doing great. I should try that. I feel for you because you just want a simple answer. You just want to feel better. It seemed like every time my Dr. and my wife and I filled-up my "blackboard" with an action plan we had to completely erase it and start over. I hope you get things sorted soon.