HealingWell
Search Close Search
☰

Worried sick

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/20/2016 11:40 AM (GMT 0)
Hi all
I really don't know what to do right now and could do with some advice, I've been on steroids since I started my flare up in may and every time I taper off to 10mg or 5mg my symptoms start to come back, I had an appointment 2 days ago with a consultant from the gastro team and he said we should try azathioprine, he said it could affect my liver but we will do weekly bloods to check and if it does then we'll try something else so that seemed OK so I've taken them for 2 days. He told me to read up on the drug which I have and I really don't want to take them because of the increased risk of certain types of cancer(it does say patients who have had a kidney transplant, which I have not) but still it is a common side effect and I'm getting myself in a state about it cry can anyone give me any advice, they will be sending me a follow up appointment for 6 weeks expecting me to have taken it but I really don't want to.
Posted 8/20/2016 1:15 PM (GMT 0)
i'm not a big fan of drugs in general, but sides effects from many of them are rare, not common - the drugs do hold some risk, but so does chronic colon inflammation - you have to weigh it all out and decide which risk is the better bet -

how long have been on prednisone and what other drugs are you taking besides the aza ? have you tried mesalamine/5asa ?
Posted 8/20/2016 1:22 PM (GMT 0)
Hi, thank you for your reply, on the leaflet it does say common side effect (may effect up to 1 in 10 people) so thats, what got me worried, I've been on the pred since may, I also take mesalazine 1.2g 2 tabs twice a day plus also pentasa suppository of a night time. X
Posted 8/20/2016 1:37 PM (GMT 0)
my suggestion would be to up your mesalazine to 4 per day, get a script for mesalzine enemas, and use them at nite, then the supps in the morning -

as far as the pred, i would stay on 10mg to give the added meds a chance to do their thing -

what are your current symptoms ?
Posted 8/20/2016 1:53 PM (GMT 0)
Hi, I am on 4 mesalazine a day, yes he has told me to stay on the pred 10mg for 2 weeks then 5 mg for 2 weeks and then 5mg every other day for a week, when I'm on a higher dose of pred I'm fine but as soon as I get down to 10mg or 5mg I can feel the symptoms come back like going more often looser stools and some cramps and a little mucus and last time I came off altogether and within a few days I had the blood return also. X
Posted 8/20/2016 2:09 PM (GMT 0)
oops - sorry, missed the 2xper day -

sometimes when you come off the pred, your body needs time to adjust - for many, including me, the blood is the last symptom to go - try and be patient and let your body heal -

and get on some enemas if you can - they will help with the blood -
Posted 8/20/2016 2:32 PM (GMT 0)
I agree with soy to add mesalamine enemas into your nightly routine (reaches more area than suppository), they helped me when oral meds did nothing.

You need to get off steroids so that should be a goal even if it means trying stronger meds.
But first maximize all mesalamines you take, if that doesn't work you could try Balsalazide, it works a little differently than mesalamine and some people get good results.

What is your diagnosis? Meaning where is your inflammation located? Left-side, pan colitis, where?
Posted 8/20/2016 3:16 PM (GMT 0)
Thanks for your help, I just really don't know what to do regarding the azathioprine, it frightens me, probably like a lot of people I worry about getting cancer as it is... I'm really not happy about taking a med that increases my chances of getting it:-(......I would just constantly worry about it and as we all know that's not good for us. X
Posted 8/20/2016 4:54 PM (GMT 0)
I understand your concerns, I felt must the same as i will shortly be starting azathioprine. iPoop posted some very interesting statistics recently regarding this drug and it helped me..here is some of it which I kept and I am sure he wont mind me posting.

"Yes, lymphoma is the most concerning side effect that gives us all a moment of pause/concern when considering immunomodulators or biologics. I think it helps greatly to put that risk into perspective. The odds of the average healthy person on the street getting lymphoma are 2 in 10,000 (or 0.02 percent). The odds of a uc patient on immunomodulators (Imuran/6mp/azathioprine) getting lymphoma are 4 in 10,000 (or 0.04 percent). The odds of getting it while simultaneously on both biologics and immunomodulators is 6 in 10,000 (or 0.06 percent). Of those who get it, 66 percent are able to put it into remission. To put those odds into perspective, the odds of dying in a car crash in the usa are 1 in 133, and of heart complications are 1 in 5. So, we're talking really small odds."

The lymphoma risk was from the clinical trials where 2 adolescent males got it while on both remicade and imuran/6mp, and some gastroenterologists say don't be on both medications simultaneously if you fit within that demographic.
Posted 8/20/2016 6:27 PM (GMT 0)
I couldn't tolerate azthropine, it gave me pancreatitis. I stopped taking it and I was fine. However, that being said, would I take it if I could? Most definitely. I moved on and now I'm on Humira, which is working out OK but it would have been nice if the drug that just costs a few bucks you take orally worked out instead of the one I have to inject that costs a small fortune.

You want to get off those steroids as soon as you can, so I'd go with the az and your maintenance drugs. im not a fan of all these drugs and possible side effects either, lol, is anybody? But in a nutshell, the benefit outweighs the risk, inflammation in your colon is a more immediate concern than maybe side effects of az.
Posted 8/20/2016 10:01 PM (GMT 0)
Thanks everyone for your replies, I feel a bit better having read them, when I was first diagnosed about four years ago I was diagnosed with proctitis but after my recent flare they say it is on my left side and has gone from mild to moderate.... I will be off the steroids in 5 weeks as he wants me to over lap them with the azathioprine. X
Posted 8/22/2016 2:10 PM (GMT 0)
Yes, we're all a little worried when starting these medications. Putting risk and benefit into perspective is key, and I wish doctors spent more time with that and even cite statistical odds of side effects, as I know it helped me greatly when making the decision (myself). There's mid 60's to 70 percent odds that 6mp will improve your uc symptoms. At less than 1 percent that is a rare side effect. I've been on healingwell since 2012, and only read one instance of it (the person achieved remission to theirs), which follows those general odds.

I was on 6mp for 2.5 years and during that time I experienced no concerning side effects. I didn't get sick any more than is typical from me. I did sunburn easier, which is pretty common on that drug, just use extra precautions when out in the sun for extended periods of time. about 20 percent experience nausea when initially starting 6mp/Imuran/azathioprine. As a precaution, take it before bedtime with a snack.

The stats I cited (here and in Poppie's quote) were from the Crohn's and Colitis Foundation of America:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
Posted 8/22/2016 5:51 PM (GMT 0)
Hey Scoobylouie just my two cents. I've been on aza since 2005 and I haven't had any issues. They do frequent blood tests to make sure your liver is good.

I had my genes tested with 23andme and I found that I metabolize azathioprine very well. And that remicade could have caused cancer some time. There is also a blood test called Prometheus to determine if you're in therapeutic range. To help my liver I detox regularly.

Organ transplant patients are on this drug indefinite and they are fine. Don't be so worried :-)
✚ New Topic ✚ Reply