AZA - are there any alternatives? & what should I do?!

[Zootini]

Hello! I have been on prednisolone for 2 years now and my crohns is still not under control! I have been able to reduce my dose of pred (now on 7mg daily) but cannot and do not feel comfortable leaving the house without taking a 30mg Codeine to settle my gut.
I went to see my specialist the other day and they have been questioning whether to start me on aza for the last few months, after a scan it was confirmed that I still have inflammation in my bowel. They want to start me on azathioprine now but after picking up the tablets the other day I can't bring myself to actually take them...Im only 19 and the thought of possibly developing womb, lymphatic or skin cancer is really scary to me and also the hair loss etc...

What I would like to know is if anyone knows of any alternative meds which could help? Or if anyone is on azathioprine and how they find it works?

Any help or advice would be greatly appreciated! Thank you

 

[Jennifer]

I started taking 6MP (similar to Aza) before I was 15 and took it up until I was 30. Never had any side effects from it. I was also put on Asacol (not a sulfa drug like the one in your sig but does the same thing) as well (its often the combination of meds which can help you get into remission). Alternatives could be Humira (which I currently take) or Remicade yet even those have their fair share of "possible" side effects. I say that with quotes because many have few to no side effects (even for drugs like Aza and 6MP). Good luck and keep us posted on how you're doing and what you decide.

 

[macca]

Hi Zootini,

I am 20 and I was diagnosed with Crohns in 2009 when I was 17 and I have been through hell (I haven't had surgery so could have been worse!)

I tried several different cocktails of meds, prednisolone, pentasa, budesonide and so on but none seemed to have any longer term effect. The only med that had any long term effect for me is Azathioprine and Infliximab I started the pair 2 years ago and they have been very effective but recently I stopped taking my Aza because I started to lose my hair (very minimal but I didn't like the thought of it spreading) I am now on Methortrexate 25mg which is just as good and my hair has started to grow back.

I know several people all on Aza some who have been on it for 3-4 years and haven't experienced any hair loss at all or any bad symptoms.

I am not sure about alternatives to Aza but my personal opinion is that it is an extremly good and effective med. This could be a slightly clouded judgement due to my experience of Aza but most people I know with crohns do swear by it.

I hope this is of help to you, my advice would be to give Aza a try if your pred is no longer working properly as I know so many people that have had such good results from it.

---------------------------------
Max, 20

Current meds:
Methortrexate 25mg Weekly
Folic Acid 5mg Daily
Infliximab 8 weekly infusions.

Previous meds:
Predisolone
Budesonide
Pentasa satches and tablets
Azathioprine

 

[EmilyElizabeth]

Hi Zootini, I have just started on Aza a couple weeks ago and I was pretty scared as well!! I've always been sensitive to meds and hate taking them so I've been just waiting for pancreatitis or any of those other symptoms to show up, but nothing yet! Not even nausea. As far as whether it's working, it's hard to tell because I had few symptoms when I started it (it was after a colonoscopy that revealed the damage.) I have some narrowing that will lead to strictures requiring surgery if I didn't get on something so I figured best to give it a shot! As far as the cancer risk my mindset is get your bloodwork, don't smoke, get all your vitamins and protect yourself from the sun and maybe you can counter the risk, as many healthy people not on aza don't do any of that and get cancer. Good luck with whatever you decide, you're not alone in it anyway! xo

 

[Zootini]

Thank you all for your replies!! Very much appreciated! I think I will give it a go! Thank you all so much and good luck to you all too xxxxx

 

[hawkeye]

I've been taking it since 1991 at varying doses with no side effects.

 

[kh216]

I did not have any side effects when I was on azathioprine and it worked very well for me.

However, it is very slow acting and it takes about three to six months for it to work. Therefore, you will still need to take your other Crohn's medications until it starts working. Also, it is very important that you get your blood work done at regular intervals under your doctor's direction. He or she will need to monitor your liver function blood work and complete blood counts. Depending on your symptoms and the results of your blood work, your doctor may or may not change your dosage.

 

[Catherine]

Sarah appears to have no side effects from aza. Her imflammation levels are much improved.

 

[Princess1991]

Hello, i got diagnosed with crohns in june and started on Azathioprine in september and have been on them since and i have been fine had no hair loss and have blood tests weekly, its very rare that cancer is caused by this. You will be fine they constantly check your bloods with this. Good luck

 

[Danico85]

been on aza for about 3 years and had no side effects. its a pain going to the docs every month to get my bloods taken right enough.

 

[kh216]

Have you started the azathioprine, Zootini? How are you making out with it.

 

[Zootini]

Yeah I gave them a go and had an allergic reaction sadly!! So not too sure what's next....my doc just said to stay on the steroids :/ doesn't make much sense to me as they aren't working!!

 

[kh216]

Zootini,

I'm sorry that Azathioprine did not work out for you. Would you consider trying a biologic medicine, like Remicade and Humira? Long term use of steriods are not good for your bones.

 

[Zootini]

Defo! I'd try anything really which would get my crohns under control! Will have to mention them at my next appointment. Are there any serious side effects do you know?

 

[kh216]

Yes, biologic medications are very strong and there are risks for side effects. However, it is also not good for anyone's health to have constant Crohn's flares. Doctors also do not want patients to be on steroids for a long period of time because they are bad for a person's bones. Here are their websites:

http://www.remicade.com/
http://www.humira.com/

You can also check out the Subforums regarding Remicade and Humira on this forum.

If you decide to try these medications, either you or your doctor will need to check out your medical insurance coverage because these are very expensive drugs.

Also, always remember that every Crohn's patient is different. Some medicines work better for some than for others and some may get unpleasant side effects and others won't. I hope that you and your doctor will soon find a medication that works for you.

 

[Zootini]

Thank you so much for all of your help! The thing that scares me is the risk of cancer, especially is says in children, teens and young adults, i am only 19, its a shame there's nothing else that doesn't carry such heavy side effects!

 

[kh216]

The risk of getting cancer from these drugs is very, very small. Remember, there is also an increased risk of colon cancer from active Crohn's so it is very important to get it treated. In addition, your quality of life is much better when you don't have to suffer from flares.

 

[hawkeye]

I went on aza when just about the time I turned 18 and have been on it for 22 years if that helps. I credit it with keeping my Crohn's largely under control for most of those 22 years.

 

[Zootini]

That's true I suppose. I have been diagnosed with lactose intolerance literally today too! So that may play a role in my everyday symptoms.

And that's good to heat Hawkeye, will see what my doc suggests!