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01-05-2015, 06:21 PM   #1
Kimberleyannecreate
 
Join Date: Nov 2014
Location: Wes sussex, United Kingdom
Aza side effects

Hey all,

Happy new year! this years gunna be mine, no more hospital visits I swear
My brief story- still ongoing, Calprotectin levels very high, diaherre, weight loss, sickness and mouth ulcers. However colonoscopy, MRI, capsule endoscopy came back norm but was on steroids at the time-possibly healing my insides. Therefore difficult to give a clear diagnosis as yet, consultant says is 95% sure of Crohn's disease. Anyone else have the problem of an ongoing non confirmed diagnosis. Was on Pred, now on Aza, which all seems to have taken effect., put weight back on and stop running to the loo as much.


So I have been on azathioprine for about 2months now, started off with terrible nausea which has faded but does arise a little more at weekends when I have to take double the dose. I have been having regular bloods and all looks fine, they actually seem to be calming my tummy and lessening the diaherre
However now I get very constipated, does anyone else have this issue?

I seem to be developing the dreaded morning aches and pains and ridiculous fatigue by lunch I feel a lot more awake but it takes a lot anyone have any solutions apart from coffee?

My skin over the last two weeks has been come insanely itchy! I itch everywhere, there is no real visible rash apart from small spots on face everywhere else no signs, just severe itchiness. Anyone else experiencing the same?

Finally maybe it's just the cold weather but my feet and hands are freezing like always, even in my nice warm house.

2014 was not my year, I had to quit my job to recover for a while. But as I say 2015 I hope for big things and want to return to work.

Would love some advice all. Thanks very much xxx
01-06-2015, 08:04 AM   #2
alex_chris
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Join Date: Apr 2013
Location: Frankfurt, Germany
Hey all,

Happy new year! this years gunna be mine, no more hospital visits I swear
My brief story- still ongoing, Calprotectin levels very high, diaherre, weight loss, sickness and mouth ulcers. However colonoscopy, MRI, capsule endoscopy came back norm but was on steroids at the time-possibly healing my insides.
First, sorry to hear you have problems and I think it is great you joined the forum and are also positive about getting Crohn's (or whatever the diagnosis is under control).

Just one quick comment about steroids, they are not really healing anything, they are just sort of a bandaid, unfortunately. This is why they are not used as long term treatment (also, because of severe side effects in case of long term use).

So I have been on azathioprine for about 2months now, started off with terrible nausea which has faded but does arise a little more at weekends when I have to take double the dose. I have been having regular bloods and all looks fine, they actually seem to be calming my tummy and lessening the diaherre
However now I get very constipated, does anyone else have this issue?
First, I am curious, why would you take a double of the dose of aza on weekends? Azathioprine has a rather short biological half time in your body of just a few hours. That is the reason why doctors prescribe it to be taken twice a day in the same dosage and if possible taken under the same conditions (after eating something) and at the same time, to keep the purine level (aza is converted to 6mp in the body) at the same level. A double dosage on weekends sounds very odd to me.

As to constipation, aza should not be the effect of that. At least, I never heard of it. It is good that your blood tests are fine. Make sure that you do them even in the long term every 4 weeks, with the liver function indicators and the inflammation indicators being the most important ones.

I seem to be developing the dreaded morning aches and pains and ridiculous fatigue by lunch I feel a lot more awake but it takes a lot anyone have any solutions apart from coffee?
Fatigue, aches and pains can be a side effect of aza, but they can also be side effects of other more general Crohn's symptoms. I have had Crohn's for 15 years and I have had periods of fatigues on and off aza, mostly related to anaemia. My fatigue usally goes away during the week, as I am working in the office, which means I am rather active. As to coffee, please be mindful of it a bit, coffee can have detrimental effects on Crohn's due to its acidity.

My skin over the last two weeks has been come insanely itchy! I itch everywhere, there is no real visible rash apart from small spots on face everywhere else no signs, just severe itchiness. Anyone else experiencing the same?
Yes, some itching is also a potential side effect of aza, but if it is too bad, you better ask your doctor. I never experienced insane itching and I have been on aza from 2003 to 2008 and then now since late 2010. I have had itches and even visible rashes, but never really bad.

Finally maybe it's just the cold weather but my feet and hands are freezing like always, even in my nice warm house.

2014 was not my year, I had to quit my job to recover for a while. But as I say 2015 I hope for big things and want to return to work.

Would love some advice all. Thanks very much xxx
I really hope things work out for you. One other question, why did your doctor not start you on a biologic (humira or remicade) instead of azathioprien if you had active Crohn's disease at the preliminary diagnosis? The reason why I am asking is because, although biologics are a lot more costly, they are the first choice these days, except for patients who do not have active Crohn's symptoms or who have a history of aza/6mp which worked with them.
__________________
-----
Crohn's diagnosed in 1999
On Aza from 2003 to 2008 and from 2010 again until Today
60cm of smaller intestine removed in 2003
Vitamin therapy with D3, B6, B12, magnesium, zinc, folic acid for years
Iron therapy with Tardyferron 80mgx2 and Loesferron 80mg for years
Yoga, running, freeletics on the sport side!
01-06-2015, 08:55 AM   #3
Kimberleyannecreate
 
Join Date: Nov 2014
Location: Wes sussex, United Kingdom
Hi alex,

Thanks for your reply, I really appricate it.

May I ask how long it took for them to diagnose you? Did you ever have any camera tests that came back normal?
I am now off the steroids thank god! They made me grow a very small beard and have severe anxiety! but stopped te diaherre
As I was trying to tapper off the steroids I kept flaring up, which lead my consultant to introduce te Aza as I was coming off the steroids.
I am currently on 25mg daily mon-fri, then 50mg sat-sun. Not quite sure why, just the directions I was given. I am also on allopurinol 100mg once a day mon-sun.

Do you think the constipation could be due to an internal stricture? When I had my MRI this didn't show, however this was back in March. I've had at least 3 flares since then.

Noted re. Coffee, I will ease off. It's the only thing that seems to awaken me the steroids made me go faster than road runner, now I just feel so tired like all the time!

I'm hoping the itching will subside soon, I have updated my consultant. Hopefully it'll ease off.

I wasn't aware about biologics, what do these do? I haven't heard this be mentioned. Maybe this is because I hadn't had a full diagnosis? Did this work for you?

Thank you for all your help
Kind regards
Kimberley
01-06-2015, 06:57 PM   #4
alex_chris
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Location: Frankfurt, Germany
May I ask how long it took for them to diagnose you? Did you ever have any camera tests that came back normal?
I was diagnosed pretty quickly, but that was also back in the old days (1999) before pill cameras and other things. I was diagnosed "classically", that is via a colonoscopy, blood tests, biopsy of tissue, fecal analysis.

As I was trying to tapper off the steroids I kept flaring up, which lead my consultant to introduce te Aza as I was coming off the steroids.
Ok, that is the standard approach doctors have taken until about 10 years ago. That is, first use steroids to fight active inflammation, then introduce aza and then taper off.

I am currently on 25mg daily mon-fri, then 50mg sat-sun. Not quite sure why, just the directions I was given. I am also on allopurinol 100mg once a day mon-sun.
Do you take azathioprine or 6mp? I am asking, because for azathioprine, the effective dosage is 2mg to 2.5mg per kg bodyweight, while for 6mp (it is the same drug as aza, just the "pure" form) it is about 1mg.

If you are on azathioprine, then 25mg and 50mg sound very low dosages, far below any effective range. Some doctors start patients slow to test for side effects, but after a few weeks get you to the effective range.

Do you think the constipation could be due to an internal stricture? When I had my MRI this didn't show, however this was back in March. I've had at least 3 flares since then.
I am not a doctor, so can't tell about that. Usually, internal strictures in the smaller intestine would not result in constipation in the larger intestine. Constipation can have a wide variety of issues, I have not heard aza to be one, though.

I wasn't aware about biologics, what do these do? I haven't heard this be mentioned. Maybe this is because I hadn't had a full diagnosis? Did this work for you?
I suggest you look around on the forum and related information on the internet. It is rather important to get an overview (at least I think so) of what the standard treatment is and why and what meds and other things are available. Biologic drugs (humira, remicade, cimzia etc.) are drugs that are the next development stage after azathioprine/6mp and have been introduced 15 years ago. Originally they were only used for severe cases, but it is now standard to use them pretty much on any patient which has an active decease. Only if you have very mild symptoms you would not consider them.

It might make sense to also ask your doctor about it, and generally read up on these drugs first.

All the best to you and I hope you manage Crohn's well quite fast.
01-07-2015, 01:59 PM   #5
SarahD
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Location: Cambridge, United Kingdom
25mg Aza is NOT a low dose when taken with Allopurinol, which changes the metabolic profile of the Aza. It allows the Aza to be converted into more of the good compounds and less of the harmful compounds.
__________________
Symptoms from the age of 12. Mis-diagnosed with UC at the age of 13, and later diagnosed with Crohn's in January 2012 at 24 years old. Disease mainly in terminal ileum.


Current meds:
Azathioprine, Allopurinol, Calcichew D3-Forte, Fortijuice, Alendronic acid, Ranitidine

Previous meds:
Augmentin, Doxycycline, Lansoprazole, Asacol, Pentasa, Prednisolone, Entocort, Cipro, Flagyl, Elemental Extra 028
01-08-2015, 10:35 AM   #6
alex_chris
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Join Date: Apr 2013
Location: Frankfurt, Germany
25mg Aza is NOT a low dose when taken with Allopurinol, which changes the metabolic profile of the Aza. It allows the Aza to be converted into more of the good compounds and less of the harmful compounds.
This is true to some extent, but to simply put. Allopurinol is used in rare cases (no extensive trials have been done with aza/6-mercaptopurine (6-mp) and allopurinol combination therapy) of people who build up 6-methyl-mercaptopurine (6-mmp). About 30% of patients on aza/6mp build up high levels of 6-mmp which are principally biosimilars of 6mp and have the same effect (blocking DNA and RNA replication), but unfortunately correlate with chronic, chemically driven liver damage - which is why in case of a build up of 6-mmp in the blood, aza/6mp is usually stopped.

As far as I know, allopurinol is only rarely used to keep patients on aza/6mp and reduce 6-mmp levels due to the lack of larger studies (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2659140/ - http://www.ecco-jccjournal.org/artic...011-7/abstract were recent studies, both with only few people included), even though the effect of allopurinol has long been known.

The reason why azathioprine/6mp intake is halved in case of allopurinol addition is simply because allopurinol is itself a chemically structural similar to 6mp. Or to say it simply, putting e.g. 50mg of aza and 50mg of allopurinal together results in a dosage effective combination similar to 100mg+ of aza.

In any event, whether aza is used by itself or 6mp by itself or each of them in combination with allopruinaol, the combined effective dosage has to be similar to the clinically determined effective long term dosage (2 to 2.5mg per kg bodyweight for aza and 0.9 to 1.2mg per kg bodyweight of 6mp), and if possible the dosage is split up into 2-3 similar dosages over a 24 hour period. The simple reason is that the effect of aza/6mp is being a biosimilar to purines (e.g. adenosine) that make up DNA and RNA. You need a certain concentration to consistently inhibit white blood cell production. If you e.g. would take a large dosage every 3 days, aza/6mp would not work. Similarly, a consistently too low dosage will not inhibit cell growth enough to suppress immune system reactions enough to prevent inflammtory reactions.
01-11-2015, 05:24 PM   #7
Kimberleyannecreate
 
Join Date: Nov 2014
Location: Wes sussex, United Kingdom
Thanks for all your info and help guys.
Looks like I need to do some reading.
The last week I have had increased joint pain and stiffness, constant itching and I swear my grip feels lessened. Has anyone else experienced this? Half the time I think am I just being paranoid and it'll go away but it isn't.

Help x
01-12-2015, 04:15 AM   #8
SarahD
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Join Date: Feb 2012
Location: Cambridge, United Kingdom
I get quite a few side effects from taking Aza too. I'm on an anti-emetic medication because I get severe nausea, which does help but not completely. The Aza also makes me ridiculously tired and gives me all-over body aches and weakness. So far I haven't found anything that helps unfortunately. I've heard that switching from Aza to 6MP can relieve some of the side effects in some cases, but I haven't tried this personally.
01-12-2015, 06:53 AM   #9
Kimberleyannecreate
 
Join Date: Nov 2014
Location: Wes sussex, United Kingdom
Hey Sarah D, luckily I have only experienced the odd few feelings of nausea, sounds like you get it bad
I will see if my consultant can change me to 6mp and my hands and joints get so tight I have limited movement, which scares me.

Thanks for your advice.
K x
01-12-2015, 07:59 AM   #10
WarrenVex
 
Join Date: Jul 2014
I've got itchy palms and my knees joints are sore after running. Are these possible side affects? If so, does anyone know what I can do?
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