Azathioprine (Imurel)and B12 injections

[vickyj]

Hi everyone.
I am new on here and posted a month ago - while awaiting blood test results and an appt. with the consultant.
I have Crohns at the ileum. (sorry if I sound a bit stilted... but I have all my treatment here in Spain - and in Spanish.)
I have been taking Pentasa (Claversal in Spain) for the last 6 months ... without much improvement. I take 6 a day.
After visiting the doc. today - I now have to have a TB test, and a couple of others - to make sure I am suitable for Azathioprine treatment. (Imurel in Spain.)
Tomorrow I have to start a course of B12 injections. One a week for a month.. then one a month for 6 months.
I have been reading alot about the side effects of Azathioprine - scared me to death btw. My nephew has UC - and has been hospitalised for nearly a month due to a very bad reaction to the drug. (Not a blood relative.)

Sounds odd - but I am looking forward to the B12 injections - hoping that they will take away this fatigue I am experiencing.

Are these two things compatible? B12 and Azathioprine - or will I have to finish the B12 before starting the Aza?

How long would I have to persevere with the Aza until I know that it was helping me?

I would so appreciate the opinions of people taking this treatment. I am a bit confused by it all.

Thank you for all your help. It has been a comfort to come on here - and to get so much understanding and information.

Vickyj

 

[Crohn's 35]

Hi Vicky I am on B12 shots and my next one is tomorrow. It does help a bit. B12 is a vitamin that is absorbed in the Ileum and we lack it when we are inflammed or surgery. Imuran (AZA) and B12 is fine, AZA is a chemical drug and B12 is a Vitamin. It affects the brain if you are low on b12.

I cannot handle the AZA because it affects my liver right away but others are doing amazing on it. Pentasa is a mild drug and most people took 8 a day to work, and not a strong enough drug for some. I never had a TB test for Imuran but I did for Remicade (Inflixamab), but all countries and doctors are different. Hope you feel better soon. Keep us posted.

 

[Jennifer]

I've never had either but as Pen said B-12 is a vitamin and they will not interact with each other. B-12 is in a lot of the food we eat already. From what I've heard you should perk up a bit from the B-12 shots and they do tend to last a while which is a good thing. Every drug out there has side effects and they all sound scary but not everyone experiences side effects and allergic reactions aren't common. Its mainly long term use that tends to wear on our bodies but you and your doctor know this and they want to do what's best for you now.

Gook luck Vicky! Hopefully I'll be getting B-12 shots soon as well.

 

[Rebecca85]

I am taking azathioprine, and my Crohn's is also in the ileum. When I first started taking the aza I did have some pretty bad nausea. It seems that this is a common side effect. I found that eating a large breakfast with the aza helped. I am on weekly blood tests to make sure it isn't affecting my liver. I also had a blood test before starting the aza, to see if I had the right enzymes to process the drug - it lessens the chances of a severe reaction. I am not sure if it is available in Spain though!

 

[vickyj]

Thanks

Thanks for the replies.
I have heard the B12 injections are a bit painful....but hey, 2 colonoscopies in a month - without being knocked out - shouldn´t think they could compare. lol.
I have had blood tests - just the TB test now. The doc. did tell me that I would need regular blood tests as soon as I start taking Aza.
Thanks for the tip on the big breakfast Rebecca. I am a bit of a "sicky" person - so the tip will come in useful.

The health system is very good here in Spain btw. It is very similar to the NHS in the U.K....... but alot younger. So it seems alot more "enthusiastic". I am shocked at some systems, and the fact that people miss out on treatments they should have because of the cost. So I suppose I am very lucky. I pay nothing for consultations or tests or examinations.....and the medication is very heavily subsidised - specially if the ailment is chronic. I just pay a monthly quota (about 250 euros), which is the standard payment for everyone.

Thanks, Vickyj

 

[seaofdreams]

Hi Vicky, welcome to the forum
Up until very recently, I was on Azathioprine. I was put on it in August last year. I was doing really well on it, I had almost no side effects and my symptoms were manageable. I needed to have a test for TB and also have vaccinations before I went on it but they went fine. I also had to have weekly blood tests at first to monitor my liver and then it dropped to fortnightly, then monthly then once every 3 months.
Don't let the side effects put you off, I did really well on it for a year and there are many other people who have benefited from it too.
I hope that it works really well for you, keep us updated

 

[DustyKat]

Roo has been on a maintenance dose of Imuran since her operation 4 years ago. It is only a low dose and she has had no side effects throughout that time. She initially had bloods taken weekly, then fortnightly, then monthly and eventually 3 monthly. She is also on B12 injections three monthly and will be for the rest of her life.

Dusty.

 

[Astra]

Hi Vicky

I've been taking Pentasa for 5 years and it has kept me in remission all that time, until I became complacent and stopped taking it! DOH!
ended up in hospital half dead with a blockage!
It's a good med if you're not flaring, acts like aspirin for the guts, helps to maintain and ward off inflammation. I'm still taking 8 a day.
I tried Aza 5 years ago when first dx, but within weeks became allergic to it, but give it a go, it might work for you, you'll never know until you try, if you don't like it, then come off it.
good luck Vicky
xxxx

 

[vickyj]

Thanks for such positive replies! I am feeling better already. Just finding people who know what you are talking about - and who are interested is such a boon.
(instead of, "where´s Vicky? Where do you think? In the toilet again.........) The number of people who think that Crohns and UC is just that we go to the bathroom alot, is unbelievable.

 

[Liverpool FC]

Hi VickyJ,

My crohns is in the ileum too. I have been on pentasa too (never on its own) but in my head i firmly believe that is is doing me as much good as asacol did - which is absolutely nothing! lol

I've been on aza now for about 4 months i think -i've heard it said it usually takes 3 months to take effect. When i started it, i was stepping down from steroids so i think the after effects of them lingered in my system, which gave time for the aza to gradually increase over weeks where i went from 50 to 100 to 150mg (which is the highest i'm allowed). I continuously got full blood test and liver function tests taken to make sure nothing bad was happening - although i was quite lucky as i just decided to keep going weekly for a longer time than necessary because i was a bit worried.

I haven't noticed any ill effect from them, but i think perhaps that they are not enough to keep me in remission as I feel i'm slipping back a bit into the old way of pain etc but i have been on the verge of surgery so perhaps it is expecting too much for the aza to keep me in remission on their own.

In terms of B12, I got 6 jabs over two weeks when starting the aza (first ever time i'd got B12). I'll be honest - i continually felt like i had no energy and felt mentally drained and foggy before these injections... and unfortunately have never had this change (i'm also on iron). I really hoped I'd all of a sudden get a big boost-didn't happen. Perhaps because it took 6 years to diagnosis its going to take an awful lot more and more time, but i would definately give it a go if I was you and I really hope you get a real energy lift from the B12.

The jabs are marginally more 'sharp' feeling than getting blood taken. I just look away and grit my teeth! lol.

I felt scared too, really scared, but trusted my consultant 100% and knew if i got regular blood tests that the aza would quickly stop and that the bloods would almost certainly return to the normal.

I hope my experiences help you in some way and hope you come to a decision you are comfortable with whatever it may be.

 

[Liverpool FC]

Thanks for such positive replies! I am feeling better already. Just finding people who know what you are talking about - and who are interested is such a boon.
(instead of, "where´s Vicky? Where do you think? In the toilet again.........) The number of people who think that Crohns and UC is just that we go to the bathroom alot, is unbelievable.

Whilst i in no way envy you and your frequent loo stops, at least it may provide an indication to people that something is wrong (or i hope it does). I have 'normal' toilet visits so there are no 'physical' signs that there is anything wrong.

I'm sure you agree that no-one (except those who suffer) fully grasps just how debilitating the pain is, how uncomfortable and embarrasing the wind is and how unrelenting and depressing the continual fatigue is.

oh dear... i think i've just depressed myself with my moaning... lol.

 

[reidyjo81]

Hey

I am also on Aza and not had one problem with it at all, I have taken it for about 6 years. The only thing I find annoying is all the blood tests as I am crap at organising myself and keep upto date with it all. Lets hope you will be the same, its def worth a try. Also have B12 which I find help.

Good luck with it and let us know how you get on xx

 

[Lisa]

I get B12 shots every 2 months (when I have my infusion) - and the shots have never really been any worse than any other shot for me.....

 

[vickyj]

Liverpool and Reidy - thanks for that. I am feeling alot more positive about the Aza now. I have my next hospital appt. Oct. 6th - by which time I will have had the other tests.
I had my first B12 injection this evening... it really wasn´t too bad at all. I don´t know if I expected to bounce home - but I am now lying on the sofa exhausted lol. But I am usually lying on the sofa exhausted at this time of night anyway. Maybe tomorrow I´ll spring out of bed and bounce to work?
"unrelenting" is the word - for the fatigue, Liverpool. I know exactly how you feel. Some days I feel "ill" with just the tiredness.
People just don´t get it. Mind you, I tell very few people I have Crohns - alot of the time it´s not worth the hassle, when you know that they aren´t really interested. Also alot of people are uncomfortable with any gruesome details. And sometimes it is all so bloody undignified that I prefer to keep it to myself. lol (Except on here of course! This place is a Godsend.

Vickyj

 

[reidyjo81]

Hey,
Cool you had your B12, I usually find it takes a couple of days, but maybe your only see the difference after a few injections.
Ditto with regards to tiredness, somedays I just want to call in sick cause I am so so tired, but how can you explain that one without going into about your Crohns. Totally know how you feel

Jo xxx