Hello all

[Begotten]

Hello to anyone reading this, I often come upon this forum when searching the internet for anything Crohns related so I decided to join up just now. My names Ryan, I'm a 21 year old man diagnosed with Crohns at the age of 16.
Since diagnosis I was admitted into hospital for IV steroids for a 2 to 4 week period then released and began treatment on Prednisolone(sorry my spelling on the medication may suck) for a few years constantly upping and then lowering the dose only to find as the dose lowered that my symptoms would return with a vengeance.
I've now moved onto taking 375mg of Azathiprine daily along with currently a 500mg Ciproflaxin antibiotic twice daily to combat an infection in an area I had an abscess lanced off last year.

 

[David]

Hi Ryan and welcome! I'm really glad you joined!

To clarify, are you still on prednisolone and have been for a long time? You're steroid dependent? And 375mg per day of Azathioprine? Wow, that's the highest dose I've seen of that for someone with IBD. Is that where you started or have they slowly upped your dose? And you're SURE it's 375mg you're supposed to be taking? How long have you been on the Azathioprine for?

It's great to have you here. See you around

 

[Begotten]

Ah no sorry for the confusion. I'm actually no longer on the prednisolone, once they figured out that every time my dose went down the symptoms came back they moved me onto azathioprine and over the course of a year now my dose has slowly risen to 375mg.

I often get asked by medical staff ( especially those at the pharmacy when picking up my azathioprine ) if I'm sure that 375mg is the correct dose and if i tolerate it and I'm certain it is ( they have even rang my consultant to double-check the odd time ).
I'm not sure what dosage other people are on for IBS? but 375mg is around about the dosage where I'm starting to feel like my symptoms are slowly but surely going into remission, fingers crossed anyway!

 

[David]

Good, I'm glad you're off the pred

People with IBD tend to be on dosages from 50-150mg of Azathioprine with some outliers each direction. I'm not surprised that the pharmacies are checking twice. I hope they're drawing your blood regularly to make sure there aren't any issues there?

 

[Begotten]

Most times twice monthly, recently I've been seen by my consultant on a month-6 week basis.

Been on this dose for quilt a while though, did try lower it last September by dropping 25mgs every month but it seemed to just make my Crohns flare up again. My Crohns is quite severe in the large bowel and I have an on-going healing fistula if that explains why my dosage is so high maybe? Either way its a question I'll be bringing up at my next meeting with my consultant within a few weeks!

 

[David]

If you want to really throw your consultant for a loop ask them if they think monitoring your 6-TGN and 6-MMP levels would be useful (click those links to learn why). They could monitor those and try lowering your dose while putting you on mesalamine which is shown to increase 6-TGN levels when taken in conjunction with Azathioprine.

Do you know if they did something called a TPMT test before putting you on the Azathioprine?

 

[Begotten]

Noted down so I remember to bring it up when I next visit, thanks for the information

 

[David]

With 6-TGN and 6-MMP you may want to print out the references we've added at the bottom of each article in case your doctor looks at you like, "WTF?"

 

[Begotten]

In reply to your other question about the test I definitely didn't have that test done before being put onto Aza. Would make sense to be checked though, Its a concern that I've raised before that even on this dose sometimes I'll have bouts of feeling like its not completely working to the desired effect for the number of pills I'm having to take each day.

 

[David]

Indeed.

With your dose if 6-TGN isn't in the therapeutic range then I think a different form of medication might be in order if it doesn't feel like it's making any significant difference.

 

[Begotten]

Thanks again, Will remember to drop an update as to how I get on at my next consultant appointment.

 

[Angrybird]

Hello and :welcome: to the forum. I must agree that is a whopper of a dose! The maximum I got to was 200mg. I am certainly interested in what your doc says when you ask about those levels. Also curious as to when you were not getting better at lower doses why they continued to push it up instead of trying something else........

AB
xx

 

[Begotten]

Hello again. Not sure if this is the right place but thought I would drop an update into my current situation,

Last Wednesday i had to move-forward an appointment with a surgeon(to take a look at what could be yet another abscess forming that wasn't responding to ciproflaxcin) during the examination the surgeon found that i had an anal stenosis and more than likely a complex fistula.
So fast forward 2 hours or so and I was already in surgery to have a senior colo rectal surgeon have a look which lead to me having a number of things done; firstly the perianal abscess was excised and drained and a rubber seton put in place, the stenosis was dilated and a sigmnoidoscopy of the colon showed i had patches of inflammation, lastly some 'bridging' skin tags were removed.
After waking up from surgery I was told what had happened and that i would be admitted into hospital until i could see my consultant and the surgeon again. I saw my consultant the next day and my current dose of Aza has been upped from 375mg to 400mg for 2 weeks with the prospect of being moved onto infliximab. The day after I saw the surgeon who booked me in for a full colonoscopy on Wednesday just gone and i was discharged from hospital.

Had the colonoscopy two days ago and all went fine (minus waking up with a sore eye which hasn't disappeared till today, anybody else had this?) which revealed that the Crohns was in full flare(although i don't feel ill/sore which i find weird) in the large bowel but my terminal ileum was healthy/fine and my appointment with the consultant has been moved forwards to the 18th June. Also been prescribed a 3 month supply of Metronidazole(400mg 3x a day).

Apologies for the wall of text I'm not used to writing like this yet and I'm certain my spelling will be a bit off in places.

Thanks for reading

 

[Angrybird]

Thanks for the update hun. I am sorry to hear you have had so many problems developing, personally I am seeing this as the Aza is just not working so why they then decide to up the dose yet again I can't understand. Glad to hear the docs are finally looking at another med, perhaps if they can get you on the infliximab and this improves things you can perhaps try to wean down the Aza dose?

 

[Begotten]

I see my consultant on the 18th so I'll be sure to ask about the Aza / my treatment in full detail then. As soon as i told the surgeons and other medical staff my dose of Aza they all mention its probably time to try and move me onto infliximib especially now with the complex fistula.

From the pictures i saw of the inside of my bowel and the report from the surgeon my Crohns looks like its in a pretty nasty flare but at the minute i don't feel anything besides a bit of discomfort around the open wound where my abscess was excised which i find a tad strange. Maybe its the Aza just keeping it at bay somehow?

 

[David]

Thanks for the update!

Considering even your surgeons agreed, I think everyone except your consultant is in agreement that you need to get off the Azathioprine. Don't request, I think it's time that you demand it.

Good luck!

 

[Begotten]

Thanks

Will be sure to keep you posted after my appointment. Going to start looking into the infliximab and biological treatments now.

 

[Jmrogers4]

Wow, I know with my son when he got up to 150mg of the aza and we still were not in theraputic range, his GI droped it all the way down to 50mg and added 100mg of Allipurinol (which you are not supposed to take with Aza because it makes it more potent) still were not quite at theraputic levels so uped it another 25mg and that seemed to do the trick. Has been on 75mg of Aza with 100mg of Allipurinol for 2 years and has been doing really well.