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Crohn's Disease Forum » Treatment » Imuran/Azathioprine/6-MP » New medication- Azathiprine and Mercaptopurine.


03-28-2017, 04:20 PM   #1
tommy07
 
Join Date: Mar 2017
Location: Chester, United Kingdom
New medication- Azathiprine and Mercaptopurine.

Hey, Around 7 months ago I ended up in hospital due to extremely bad stomach pains, later on I found out I had crohns disease. I had symptoms for a good year and ended up having a right hemi colectomy due to a perforation in my colon.

Since then, I have had various tests because I had to have a temporary Ileostomy. My MRI of my small bowel was clear and my Colonoscopy was normal from my transcending colon down to my sigmoid/rectum where there was very very small pseudo polyps. This area also had an extremely mild crohns activity.

Going forward from this, my gastro medic explained she was happy for a reversal and she would speak to my surgeon. She wanted to put me on this medication I have mentioned in the title however wanted to check with him if he would prefer me to be on this medication now before surgery, or after. Anyway...

I am slightly worried about the medication and its side effects etc, as I have read some bad things. Its only the bad things you hear about anyway since the people having a fine time with the medication don't have a reason to post.

Is their anyone that has been on this medication and had any side effects or is their anyone who thinks I should reconsider this medication?

I am 21 and fit and well after my operation. Things seem to be getting better, especially since my small bowel was normal. Anyways cheers for the help in advance.

Tom
03-28-2017, 04:33 PM   #2
Sophabulous
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Hi Tom!

It sounds like you've had a rough few months, sorry to hear what you've been through.

I've been on this medication for 7 months now and I have no complaints. I feel much better and haven't had any side effects at all.

Your Dr will weigh you & work out what dose you can tolerate, they will also monitor your blood very closely for the first 3 months or so. If there is any sign of trouble they will let you know straight away.

It sounds frightening but they wouldn't suggest this medication if the benefits didn't outweigh the risks.

I would definitely give it a go. It's quite slow to act so it will take around 3 months to start having an effect, in that time if you change your mind or have any questions you can speak to your doctor.

Hope you continue to improve!
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Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
03-28-2017, 04:49 PM   #3
tommy07
 
Join Date: Mar 2017
Location: Chester, United Kingdom
Hey, thanks for the reply.

It really helps to listen to other peoples experiences.

I am glad to hear you have been fine on the medication, it gives me hope that it will do the trick and keep me in remission for the future.

I am just worried about the extremely unlikely side effects, the Cancers, especially the lymphoma which is stated as "incurable" due to the type it creates. Although I really don't have much choice and I will be taking the medication because the risk of not having any is much greater, I nearly pegged it once I don't fancy doing it again haha.

Tom
03-28-2017, 05:01 PM   #4
Sophabulous
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I don't know if you've ever taken prednisolone with you having emergency surgery, but that's way worse! You only have a short course of it but the side effects are maddening.

I would rather have azathioprine all day long ha ha. I was freshly off steroids and 6 weeks or so into a full liquid diet when I started it, I wasn't bothered what they wanted to give me as long as I could eat again! ;-)

If you want to try something milder such as Pentasa then I don't see why they wouldn't allow this, but I had so many side effects with that I only managed to take it for a week. It really is trial and error as we're all so different. I had another scope a couple of weeks ago and my inflammation has only reduced slightly so I don't know whether they will keep me on azathioprine or not, but I'm glad I've had some respite through taking it.

The way I think of it is that things like paracetamol will damage and kill more people in the course of a year than azathioprine will. At least you will be very closely monitored. You're hospital will dispense it to you at first until they are happy you are tolerating it well, and then they will allow your GP practice to take over the dispensing and monitoring.

On another note, although it is supposed to lower your immune system, I've found myself much more immune to the office colds and virus's since I've been on it. I can only think because my immune system isn't so pre-occupied with attacking itself anymore it is actually doing its job and fighting off actual nasties. I was constantly poorly before, but touchwood not even a sniffle since I've been on the aza. I think I had some initial fever and chills in the first couple of weeks as my body was adjusting but nothing compared to a full blown flare.

I see you're in Chester, I'm only about 45 mins from you in Cheshire. Which hospital are you under?
03-28-2017, 08:50 PM   #5
Lady Organic
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I have taken 6-mp for over a decade now without any known side effects. When we have chronic disease we dont have much choice unfortunately. I have given up about worrying about side effects of medication because I fear a lot more the complication of untreated disease, such as losing my intestine-that is my main fear with this disease. Risk of getting cancer with medication is extremly low, compared to risks of serious complications of untreated disease. I prefer living the moment present. You have already been quite some troubling time, I would not wait any more before taking some medication. Good luck!
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
03-29-2017, 09:02 AM   #6
tommy07
 
Join Date: Mar 2017
Location: Chester, United Kingdom
I don't know if you've ever taken prednisolone with you having emergency surgery, but that's way worse! You only have a short course of it but the side effects are maddening.

I would rather have azathioprine all day long ha ha. I was freshly off steroids and 6 weeks or so into a full liquid diet when I started it, I wasn't bothered what they wanted to give me as long as I could eat again! ;-)

If you want to try something milder such as Pentasa then I don't see why they wouldn't allow this, but I had so many side effects with that I only managed to take it for a week. It really is trial and error as we're all so different. I had another scope a couple of weeks ago and my inflammation has only reduced slightly so I don't know whether they will keep me on azathioprine or not, but I'm glad I've had some respite through taking it.

The way I think of it is that things like paracetamol will damage and kill more people in the course of a year than azathioprine will. At least you will be very closely monitored. You're hospital will dispense it to you at first until they are happy you are tolerating it well, and then they will allow your GP practice to take over the dispensing and monitoring.

On another note, although it is supposed to lower your immune system, I've found myself much more immune to the office colds and virus's since I've been on it. I can only think because my immune system isn't so pre-occupied with attacking itself anymore it is actually doing its job and fighting off actual nasties. I was constantly poorly before, but touchwood not even a sniffle since I've been on the aza. I think I had some initial fever and chills in the first couple of weeks as my body was adjusting but nothing compared to a full blown flare.

I see you're in Chester, I'm only about 45 mins from you in Cheshire. Which hospital are you under?
Hey again, thanks for the reply.

I guess you are right, a lot of people have also said the same thing to me about the paracetamol and stuff. I am currently taking pantessa, but my doctor told me their is a lot of research about it being useless when treating crohns especially in the small bowel or something so its probs worth me switching anyways. Going to speak to my Dr tomorrow anyway!

I am at the Countess in Chester, where abouts are you from in Cheshire?

Tom
03-29-2017, 09:05 AM   #7
tommy07
 
Join Date: Mar 2017
Location: Chester, United Kingdom
I have taken 6-mp for over a decade now without any known side effects. When we have chronic disease we dont have much choice unfortunately. I have given up about worrying about side effects of medication because I fear a lot more the complication of untreated disease, such as losing my intestine-that is my main fear with this disease. Risk of getting cancer with medication is extremly low, compared to risks of serious complications of untreated disease. I prefer living the moment present. You have already been quite some troubling time, I would not wait any more before taking some medication. Good luck!
Hey, cheers for responding. It is true, leaving crohns untreated has much greater risks compared to the meds. Its a shame I had no time to take meds before I found out my colon was ready to drop a bomb.

Living in the moment is a very good way to look at things. Thanks for the advice
03-29-2017, 09:07 AM   #8
Sophabulous
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Hey again, thanks for the reply.



I guess you are right, a lot of people have also said the same thing to me about the paracetamol and stuff. I am currently taking pantessa, but my doctor told me their is a lot of research about it being useless when treating crohns especially in the small bowel or something so its probs worth me switching anyways. Going to speak to my Dr tomorrow anyway!



I am at the Countess in Chester, where abouts are you from in Cheshire?



Tom


Yeah, I came to that conclusion myself when I read up on it! Mine is all small bowel so I didn't see the point of giving me something that wasn't even released until it's gone past where the problems are. But what do I know ;-)

I'm about 3 miles from Crewe, under Leighton hospital
03-31-2017, 10:29 AM   #9
eleanor_rigby
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hello, you might want to consider starting this medication after your surgery. A potential side-effect of it causes you to have impaired wound healing. I fell over last week and cut my hand and it is still oozing a week later. Just thinking you will probably want your surgical wound to heal as quickly as possible with no complications, especially infection.
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