Hello!

[MJones]

Hi there. I'm 28, female, and from Portland, Oregon. I was finally diagnosed with Crohn's last month, after a few years of suffering. My colonoscopy showed lots of angry ulcers in my colon and small intestine. To begin my treatment, I've been put on a 51-day course of prednisone, from 40 to 5mg, and 100mg azathioprine daily. Now I'm waiting to feel better!

 

[Dexky]

Welcome MJones! When did you start pred? It works very quickly for most it seems. Good luck!

 

[soretum]

Hi there,

I've just been diagnosed too, on the same prednisone regime with Pentasa and due to start azathiroprine soon, interested to hear how you feel with the aza...

 

[xJillx]

Hi MJones and welcome! I am sorry about your recent diagnosis. I sure hope your new treatment plan gets your inflammation under control quickly. Usually, as Mark pointed out, pred does the trick pretty quickly. Have you seen any improvement yet?

 

[MJones]

I'm nearing the end of my third week of prednisone, and I'm not quite sure how I feel yet. The last three days have been confusing. Rather than the usual movements that convince me that my colon is trying to escape my body through brute force, there have simply been.. none, until last night. It tried to escape again, and the dull joint paint I'd been experiencing got much, MUCH worse. I'm not sure if it's the azathioprine making my knees, hips, and lower back ache, but if so, it's terrible! I almost wanted to go to the hospital last night because everything hurt so badly, but I have a follow-up appointment with my GI tomorrow, so I'll wait and see what he thinks.

 

[xJillx]

After 3 weeks of pred, you should really be seeing an approvement. Be sure to make a list of all of your current symptoms for your appointment tomorrow. Your GI needs to know things have not improved.

Let us know how tomorrow goes!

 

[MJones]

Back from the doctor! He says my CRP is down under 5 now, from 25, so my inflammation is better. With that, he's going to switch up my prednisone to 20/10/20/etc. from the original taper, because he thinks that may be causing the joint pain. He's also going to raise my azathioprine to 175 from 100mg. If the joint pain persists and my intestinal inflammation remains better, he'll put me on something called sulfasalazine, and if the joint pain persists and the intestinal inflammation returns, he'll switch me to Remicade. In short, less prednisone, more azathioprine, and the waiting game for a week or two!

 

[xJillx]

Thanks for the update. It sounds like you have a good doctor with a good plan lined up for you. I hope you continue to improve with the new adjustments to your treatment plan. Good luck!

 

[MJones]

Yesterday, after taking the adjusted dose of azathioprine and prednisone around noon, I had terrible bone pains, and what felt like seasonal allergies on steroids (hah, get it?), as well as a low grade fever around 99-100. In order to get to sleep, I took some Tylenol PM to combat the puffy-headedness and bone pains. I woke up around 6AM with a fever of 101 and hurt terribly. My vision was also "weird". Called GI doctor, and he told me to stop taking the azathioprine and scheduled some blood and urine tests. Waiting to hear where to go for those, but after falling back asleep for another 5 hours after a dose of Tylenol, my temperature is now 97.3 (?) and I feel better. Just took my daily prednisone, but skipped the azathioprine today.

Are such wild temperature variations common with azathioprine, either normally or as an adverse reaction? On one hand, it'll be nice to pinpoint what's been causing so much trouble, but on the other hand, that means I'll have to switch to something else.

 

[Dexky]

Better the devil you know...right MJ? Good luck!

 

[MJones]

Thanks! I never got in for blood tests, because the lab never received the order for them, so I'll get whatever he wants done along with my usual blood tests next week. It was definitely the azathioprine causing the fevers, bone pains, and allergy symptoms, though. I've felt better since I've stopped taking it. Well, at least in new symptoms. Still having tummy troubles halfway through my first prednisone course.

 

[MJones]

I end my prednisone course tomorrow, and since I've stopped the azathioprine, he's prescribed 6-MP and 5-ASA, which I'll start tomorrow. I had blood drawn today, and will have more taken in two weeks to help see where my inflammation is with the steroids gone and with the new medication started. Here's to trying to avoid biologics!

 

[Dexky]

Good luck with it! I hope you can stay off the pred!!

 

[MJones]

Two days into the Apriso and Purinethol, I'm back to taking nothing. They made me so incredibly sick that I had to stop taking them. I had a fever of 102, vomiting, dizziness, headache, joint pains, shaking, sweats, ringing in my ears.. I couldn't stand on my own or open my eyes for four hours because the world was spinning. My GI has been trying to get me on Remicade since I was first diagnosed. I'm guessing that's my next stop. Can anyone tell me if that will make me feel like these last three medicines at all? Is there any way to tell how well I'll tolerate it given my history of being terrible at these maintenance drugs? Is Humira worth trying as a stepping stone to Remicade from handfuls of pills?

 

[xJillx]

I am sorry you are struggling to find a good treatment option. If your doctor has been suggesting Remicade from the start, then I say it is time to give it a go. Unfortunately, I don't think any guarantee can be given in regards to how you'll react to the medicine. Some people do well on one treatment, and don't on others. We are all different. Unfortunately, sometimes trial and error is all we have.

I sure hope if you try Remicade, it works well for you and you start to feel better. Good luck!