Hi Sharon :wave:

That is great news :bouncing: . I am so happy you are doing well and have such a great consultant. I was actually going to make a thread to you asking if you were back at work yet - couldn't really remember the date, although I thought it not til early June - and to ask how you were doing :)

It isn't great that you have a stricture and could possibly have to have it removed, but, hopefully the new drugs will be your cure. Your luck and health have seemed to take a good turn up - I'll keep my fingers crossed that they stay that way ;)

I am doing well. Watching my diet as usual. I have found I am more lactose intolerant than first suspected (all cheese, "lactose free" milks, some of my medicines!, etc. I have to read labels very closely) - so knowing that has helped. Funny though, from reading these boards, I should have known better. Shame on me for being ignorant :p

I am feeling better... but not as good as I feel I should be feeling. Still having pain, and having some joint issues still. But I'm at a stand still. Theres nothing more the GP can do, hes just trying to keep my vitamin levels in check... so I'm waiting on an indecisive Gastro... lol doesn't seem like a good start. Trying to keep as active as possible.

I hope someone has some info on the azathioprine for you. There seems to be a few more people lurking around now that have Crohn's... so hopefully someone has some insight for you.

Cheers to continued improvements :D

Angela

:wave: Hi Sharon... I just wanted to add my two cents worth on the azathioprine... for what its worth :)

I have had a quiet morning so far, and decided to research a bit on the drug as I am curious. You probably already know all that I am going to say - but I will share anyway :D

Azathioprine is an Immunosupressive... therefore comprises your body's ability to ward/fight off infection. This in itself can be a problem. In Crohn's disease, it can take up to six months, or more, to see results from azathioprine. Side effects include reduced appetite and nausea, sometimes vomiting, and canker sores in the mouth. A serious (and life threatening) side effect is reduced activity of bone marrow, but this can be monitored with regular blood tests. As well, users should watch for unusual bleeding and/or bruising. Some people may develop pancreatitis (inflammation of the pancreas) some months after starting these drugs.

After reading all of that... and more... in my opinion I think I would skeptical on starting this drug. Yes, it can be monitored... but how quickly will the monitoring pick up on any damages... and how quickly can they be reversed (ie bone marrow)?

Six months is a long time as well. You already have a stricture... and if it takes this drug the six months to take full effect... how much will your stricture be progressed? I would want my consultant to answer this for me.

Apparently, the 5 ASA's work very well, but only in large doses. I think I read 4 to 4.8 grams a day - that equates to 12 pills of Asacol or 16 pills of pentasa... were you taking this high a dose? I believe you are way past this point... but thought it was very interesting when I read that. It's from a lecture by David Sachar, Professor Emeritus, Gastoenterology Division, Mount Sinai Medical Center, New York, NY.

There is a really good MSN group - Crohn's Disease in the UK .... have you found this one? I googled "aziathioprine side effects" and found it that way.

I know none of what I said is really what you are looking for. Nothing can replace a person's personal expereince story. But I just wanted to share my thoughts on it. I know you probably are fully aware of everything I said...

Cheers
Angela

Hi Sharon - Just a thought....

Do you think you could handle in increase in pentasa? According to what I read you are only taking half of the recommended effective dose. Maybe an increase would help you??? I find it weird how the list of side effects for Pentasa are somewhat parallel to those of the Crohn's... the pain, diarrhea, joint pain, and so on... seems contradictory to me, to give a medicine that can cause what they're trying to help.

I hope this settles for you. Hang in there. These decisions are always so difficult, do what you feel is best for you. If you are managing without the azathioprine - maybe the risks will be just not worth it... but only you will know if it is.

Angela

I read something similar while researching yesterday. It is very interesting indeed. Makes ya wonder.

Alot of people with Crohn's are "lactose" intolerant... is it possible its this MAP bug and not the lactose? Just an idea. I'd like to know what they find in their further studies.

How are you feeling today? (And I figured a bump would be nice :) Hoping someone still has some info on the azathioprine... Have you made any further decision?)

Angela

Hi! Actually we havent really noticed any so far.The only time we did was when the metabolite of the drug got too high.. then his bilirubin went to 4.5 his platelets dropped slightly to 110. But as far as how he felt no. And once it was reduced , the blood labs went back to normal. Good luck to you!! I am a member of autoimmune hepatitis group and there is alot of info about the azathioprine. There are quite a few there who take it.
Mfife31