Bit worried that AZA isnt working.

Hi all,

Well i have been on the AZA for about 3 months now (about 1/4 way through 4th month).

I am on a taper of pred (went from 4 a day for 2 weeks to now on 1 a day with a week n a half to go)

I have been on the pred for about 6 months going from 8 a day at start down to 1, then 6 a day for a month then taper, then 4 a day for 2 weeks to start reducing.

Anyway whenever i get to about 1 a day on pred i find the pain in my abdomen returns, however i am also getting odd symptoms (which i have had before, usually for a day or 2) basically i get very hot feeling, aches all over like a bad head cold and sever nasal\behind eye pain\ heat feeling.

It settles down, but now i have pain in gut most days from sharp to just discomfort, and find when i do go to the loo its solid at first but then becomes D for about 6 goes then it stops, but pain remains.

I am on 100mg of AZA a day, taking 50mg at lunch and 50 at supper.

Bloods show all is well, i am also taking 3 210mg iron tablets a day for past 2 months.

Just getting a bit worried that it isnt doing anything and i will have to look at the surgery route which is terrifying me a bit as if that doesnt work i dont know what to do.

i cant keep taking ibuprofen and codine every day.

I know AZA can take 3-6 months, just worried that once the pred is stopped i will have to take more again just to carry on work and such.

Pred cant be the only drug that bloody works surely.

Has your GI discussed the possibility of shifting to 6-MP or combining Imuran with Remicade/Humira?

If Imuran does not work sometimes doctors will switch you to 6-MP which is just a different variation of Imuran (it is broken down in the body differently).

I am on 6-MP and if this does not work on it's own, our designated plan is to use it in combination with Humira and see if that helps as it does for some people.

I havent spoken to my specialist since i was put on aza 3 months ago, i have an appintment with him in July, but if pain comes back properly after roids finish next week i will phone and ask if i can get a cancellation appoiuntment sooner.

I will ask if i can go to 150mg of AZA as only on 100 at the mo, and will discuss his thoughts of surgery as he suggested this before and said he is happy to put me forward for it but wanted to try drugs first (he is a medicinal specialist rather than surgeon specialist).

I just really wanted the drugs to work as sso much was made of the dangers and how its a good alternative to roids, which work very well with me. so obviously a bit down that they havent started to work after over 3 months.

My daughter is currently on 125mg aza, she at was a maximum dose for weight at 100mg but a blood test was peformed that showed the levels in her blood were too low.

Sorry I can't remember the test name.

I am getting my regular blood tests and they are showing all is well, which is good, only issue was my iron levels being very poor so am on iron tablets which have made me less fatigued, although the aza makes me sleepy now and then hehe.

Hopefully i will see an improvement in the next month after the pred is totally finished and been off for a couple of weeks, hopefully if i am getting some pain in the abdomen and D I can cope with that, its the searing gut pain and feeling sick that was making me a bit useless.

I have always said i am not expecting miracles, just a bit of quality of life away from the pain.

Okay, so the pain is starting to come back quite virelently, basically the hot acid burn in the gut that comes sudenly and is quite disabling, and getting D again.

So either the Aza isnt working yet after 3.5 months, or its just coming off roids that is causing it to go a bit loopy?

So my next thought is to ask the surgeon to cut out the section that is causing me issues, the MRI showed i have about a 20cm section of small bowel just after the ileum that is thickening, and a section of that is scarred from years of Crohn's in that area which the Aza wont help anyway.

My main worry is what that will involve, i.e. will i need a bag, do you not need to have a stoma for small intestine resection? do i go on a liquid diet etc, and whats story for recovery as i dont want to be away from work for ages.

anyone have anything similar i.e. taking out a short section of the small bowel, and does it gove long term, i.e. a few years of remission type recovery?

thanks all

Rick_1138 said:

Okay, so the pain is starting to come back quite virelently, basically the hot acid burn in the gut that comes sudenly and is quite disabling, and getting D again.

So either the Aza isnt working yet after 3.5 months, or its just coming off roids that is causing it to go a bit loopy?

So my next thought is to ask the surgeon to cut out the section that is causing me issues, the MRI showed i have about a 20cm section of small bowel just after the ileum that is thickening, and a section of that is scarred from years of Crohn's in that area which the Aza wont help anyway.

My main worry is what that will involve, i.e. will i need a bag, do you not need to have a stoma for small intestine resection? do i go on a liquid diet etc, and whats story for recovery as i dont want to be away from work for ages.

anyone have anything similar i.e. taking out a short section of the small bowel, and does it gove long term, i.e. a few years of remission type recovery?

thanks all

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Rick_1138
I'm so glad I found this thread because I have the same questions. I have been on Aza for the last 4.5 years and it's no longer working. I have just had an MRI and a colonoscopy and I have a stricture and several patches of active inflammation. My GI wants me to start Humira to see if that will help. If Humira doesn't help, I will need a small bowel resection. I wish that surgically removing the diseased and scarred section of gut would be the end of it, but it's highly unlikely that is ever the case, right? It usually comes back?

I would really like to know feedback from others who've had a small bowel resection. What the recovery is like, what kind of remission you experienced after and how your life changed from this procedure. I am so worried that once I start cutting, I will never be the same and things will just get worse. Feeling really blue about it, although I know I have been pretty lucky through most of my illness.

Thanks

Hi

I have been on AZA for 1 month today. And he also started me on a steriod 40mg currently down to 20mg on Fri I started having issues not sure from what I also have a Gluten allergic so I have cut that out of my diet. But I'm nausea and have been vomiting a couple times a day.

So i talked to the Dr today and he wants me to increase my steroids back up to 30mg which I'm not crazy about because I hate the side effects. But I was feeling a little better foe 3 weeks so I will do it.

Also I may need a MRI to see what else is going on I'm newly Dx with this my biospey came back positive for Crohn's and a Gluten Allergic.


This is not fun and today was the longest day ever at work I just wanted to take a nap.

I started think that this drug was not working for me either but my Dr said it takes time.

I hope that you start to feel better hang in there.

Lisa

Well I came off the pred last week on Thursday, I was having quite bad sharp intestinal pain from about Tuesday last week and not sleeping well and generally just getting a bit depressed that as soon as I came off the pred all the symptoms were coming back. However on Saturday I felt a bit better and haven't had bad pain all weekend, although still feel mildly tender, but its a world away from what it has been.

I don't know if this is just a reprieve for a couple of days or if coming off the pred and taking the aza in the morning and afternoon is helping? Hopefully it is the drug starting to work, as its been 3.5 months of taking it now. I am having fuzzy head\sinus headaches and being quite tired, but hopefully it will be starting to improve.

If not I am getting it cut out, complications be damned

Hey Rick,

Just a general question. Do you know where your white blood cell count was in your last tests? Basically aza "works" merely by lowering/stabilizing your white blood cell quantity in the lower range of the normal range. That you get into remission is just a reaction relating to this effect (hence, it's called an immunosuppressive).

At the end, I have often felt that the question "is aza working for me?" is actually not the right one. The question that should be asked is, whether you can get to few or no symptoms by having your white blood cell count in check. A wrong dosage might not help you. Neither can aza help you if you aren't really able to manage your Crohn's via diet, stress relieft etc. - also other factors, like your iron supplements can get you into trouble. What I am trying to say is, that you should think about aza more of an electronic assistance system in your car helping you to keep your car in lane on the highway, but that doesn't mean you can just lean back, close your eyes and your car will drive for you.

I had years while on aza, when I was not in good remission and years when I was. Aza definitely helps me, but I am pretty sure if I wanted to, I could get into a severe flare up within a week or even days by just doing stupid stuff (eating the wrong things, excessive alcohol, no stress relief etc.).