Inflammation Question

Hi Everyone,
I'm new to HealingWell and so grateful to have found this forum! I was recently diagnosed with SeroNeg RA (Ankylosing Spondylitis most likely) and Crohn's. I started Humira a couple of weeks ago and I'm hoping it will help... soon! In the meantime I've been dealing with inflammation that has been allowed to run amok for the last 7 yrs while I tried to get a diagnosis. The widespread pain from the inflammation and the subsequent fatigue is absolutely disabling for me. I've tried numerous NSAID's and they all tear up my digestive tract, Celebrex included. My gastroenterologist said DO NOT take NSAID's AT ALL. My rheumatologist said it's the only thing that's going to help the inflammation. I want to just scream. I literally don't know what to do. I know I've got to get this inflammation under control in order to feel even remotely human again. It's absolutely robbing me of my life. I complained to the rhuemy about the fatigue and she said it's usually caused by a B-12 deficiency and not inflammation. But my B-12 levels are fine, as are all my other vitamin levels (D, folic acid, etc).
Is there anyone else out there who can't take NSAID's? If so, what do you do about the inflammation, pain, & fatigue?
Thanks for your help.
Chrissy

I have both Crohn's and Ankylosing Spondylitis. NSAIDs tear up my guts also. My rheumy has been great and understands the no NSAIDs issue. I was started on Remicade. I had good relief from the AS and it put my Crohn's gut symptoms in remission. This lasted for 2.5 years and then the Remicade stopped helping. Then I went on Humira. It caused a severe reaction that required me being off biologics for over a year. During the years time my guts remained calm but my AS flared.

When the Humira problem finally cleared I began taking Simppni. It has worked well on the AS and my Crohn's remains in remission. I have been taking Simponi for over 3 years now. I suggest you have a serious talk with your rheumy and if he/she doesn't budge, look for a new rheumy! There is help for you!

Thanks everyone for the replies and sharing what has helped you, and for the validation that I don't have to feel this way while waiting to see if the Humira is going to help.
Both Sulfasalazine and Plaquenil set me off big time so my doctor doesn't want to try Methotrexate. Thankfully my Crohn's is relatively mild, but certain foods and meds will tear me up, and it takes months to get things back under control in most cases. I don't know if this is normal with gut inflammation, or if it's because I'm just not being treated properly. For the most part though I think it's the AS that's getting to me so badly on a daily basis. My overall pain is pretty high. I have tried Tramadol and it didn't work for me. Min dose did nothing, max dose made me feel drugged... with an attitude... and still in pain. I'm thinking it just wasn't the right pain med for me but rheumy didn't offer up an alternative.
I asked my rheumy about Prednisone, she said it generally doesn't help AS??? I guess she meant in the way longterm NSAID use will?? She just keeps pushing NSAID's. Ugh! I see her next month and I'll be prepared to really talk to her about how severely the pain/inflammation & fatigue are impacting my life. I've only seen her 3 times so I'm still kind of learning how she communicates. Maybe in the past I just haven't been emphatic enough in explaining my symptoms to her, nor the extent of distress NSAID's cause my gut.
Thanks again for the responses. It helps me so much to be able to "talk" to people who understand and are willing to share their experiences. I feel incredibly confused & isolated with these new diagnosis's... this forum helps me feel not quite so :) Thanks!
Chrissy

I too am waiting for Humira to kick in after Enbrel quit working for my RA and prednisone is keeping me moving, working, and sane. I tapered from 10 mg to 7.5, then 5. When I got to 2.5 I started having my usual symptoms of fatigue and foot pain, and a nasty flair in my throat. Rheumy raised it back to 5 mg just 2 days ago and I feel much better but the throat thing is scary and not improving.

I didn't even know there was a joint in my throat to flare until I stumbled on something on line. I thought I had allergies that were making my vocal chords hurt and causing hoarseness, my doc sent me to gastro because I complained of food getting stuck, and he did a dilation on my esophagus and prescribed an acid blocker. It's scary but I'm hoping we can get it under control now that I understand it, I've never even mentioned it to rheumy before. Good luck, I hope you get some relief soon.

You don't have to go back to the not nice doc to get a cortisone shot. If you have a specific joint that is sore find a different ortho guy to give you an injection.
Better yet (in my opinion) take your steroids orally they don't hurt that way.

While I think some doctors might suggest celebrex for long term, I don't think too many good rheumies recommend taking advil and motrin long term b/c of the problems it can give to the GI tract. I have seronegative RA as well and have also had colitis and my GI told me as well to never take NSAIDS. I am allergic to celebrex. I go in and out of remission with the RA. It's a mystery to me but they were waiting for my next flare to do MRI's to see if they want to put me on mtx. I also have crippling fatigue and the only thing so far that has helped me with that has been prednisone. Sigh....... The fatigue has been so horrible. I think the inflammation in the GI tract goes along with inflammatory arthritis. I think it's b/c of the ramped up immune system b/c of a leaky gut. I also take probiotics now.

Good luck to you. If your rheumy doesn't give you some good answers soon, get another one. Any doctor who would tell a person with crohn's to take NSAIDs should have his/her license taken away if you ask me.