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Looking for opinions

What should I do? 39 year old white female with crohn's disease for 20 yrs. One flair up per year typically in the spring. Have always treated with predisone and quickly cleared up the flair. Have never been on maintence medicine until one year ago I started azathioprine 100 mg. This spring, April 24 th I started the worse flair up in my 20 yrs of the disease. Wondering why prednisone has not fixed me up this time it has been 4 mo. Azathioprine was increased to 150 mg 7 weeks ago and now toxicity level is too high Dr discontinued 5 days ago. I am on my prednisone taper on only 10 mg and since off azathoprine am feeling much better. Had a TB skin test and am supose to start humira upon results. Now wondering if I should ? I do not have an active flair, only some painful gas cramps.:sign0085: I don't think I am sick enough to risk all the side effects of humira.
 
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When is the last time you had a colonoscopy? Do you know if the Crohns is Active or not? I can only tell from the colonoscopy. I take the maintenance drugs to keep it from spreading but again I only know that through my annual colonoscopy.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi and welcome to the forum! :D

A colonoscopy and endoscopy is a start but you may want to do other tests as well like a small bowel follow through or pill cam to see what's going on in the small intestine as scopes don't reach that far. Once you get some testing out of the way then you'll know what's really going on inside. When you deal with repeated or chronic inflammation over the years it builds up scar tissue which can cause a narrowing and makes you not absorb nutrients as well. So on the one hand its nice to be med free but you'll still have flare after flare making the scar tissue worse over time but if you take medication on a regular basis, then you help prevent that from happening. I'm all for maintenance meds with Crohn's.

Even if you have very few symptoms it is best to see what's really going on inside because many people on the forum have mentioned having very few to minor symptoms yet their intestines look like a train wreck.

I just started Humira and haven't had any side effects yet. I hardly hear side effects mentioned for that drug on here even though its a big list. I'm pretty sure Prednisone has the longest list I've ever seen and it definitely messes people up over time. You should have your eyes and bone density checked if you haven't already since you go on it fairly often.
 
I had a Colonoscopy last month, showed active flair in only a small portion. I spoke too soon on being better. I have bloody stool today. First time in 6 days. Stomach hurts!
 
hi, i have just taken my self of the drug imuran (azathoriprine) i have only been on it for 4 months, it seams to cause me alot of bloating as it did years ago too...i have started accupaunture for the first time today so im hopeing this will help..i also hear that emu oil is a help and lemon juice is a natural for inflamation so maybee u could look into some alternative medicines??
 

David

Co-Founder
Location
Naples, Florida
Greetings and welcome :)

That you have a flare each spring makes me wonder about your vitamin D levels. In my opinion, vitamin D is an extremely important variable when it comes to IBD and I just wonder if your level plummets during the winter to the point that by spring your immune system can't cope anymore.

Have you ever had your vitamin D levels tested? If so, what were they?
 
Thank you for your response. I have never had vitD level checked. I have been taking a supplement for the past 3 months now. I also read somewhere spring Flair could be allergy realated? And that some people take allergy meds and it helps to prevent flairs. Hhmm I don't know. I checked my Dr records I have had a flair every spring only for the last 6 yrs.
 

David

Co-Founder
Location
Naples, Florida
I have indeed read some anecdotes around here where people feel that allergens make their disease worse. Whether it's coincidental or indeed the case, I don't know.

How much vitamin D do you take daily?
 

David

Co-Founder
Location
Naples, Florida
If you are indeed deficient in vitamin D, chances are that 1000iu would be nowhere enough to get you into optimal levels. I'd suggest getting your actual levels tested.
 
deniselind, I have no experience with Humira, but I was malnourished due to the IBD for a long time and I developed problems with my memory, concentration and severe fatigue. Check out the wiki forum for Vitamin level, iron stores, etc for more info. Make sure that you have had these checked out.
 
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