Need advice - On prednisone and reluctant to restart Azathioprine

Hi everyone,

This is my first post to this forum; I've read a lot of helpful posts... it is comforting to see a forum like this where others can easily share their questions and concerns... and there's certainly quite a bit of very useful information here that's helped me out a lot in the past.

I'm not sure exactly what the posting etiquette is, but I hope it's OK to give a bit of my backstory before asking a question... Apologies in advance for this very long-winded post...

I'm a 31-year-old male who has been diagnosed with UC since 2008. Since my initial diagnosis, my GI first put me on mesalamine (Asacol, 4.8 g/day), which didn't work by itself, then added Prednisone to that, which worked until I got down to 20 mg/day, then stopped working. Then he added Azathioprine (generic of Imuran) 150 mg/day to the mix, and also switched my mesalamine from Asacol to Lialda (still 4.8 g/day). With all of this, I was finally able to eventually get off the Prednisone after some months, and then finally get off the azathioprine after a total of being on it for 3 years... by the start of 2012, I was finally only on the Lialda, which was a huge relief for me!

Actually being on azathioprine was very unsettling, since (as those who take it know) not only is it one of the more "toxic" meds... but also I was told not to have kids during that time or for 6 months afterwards... this caused a huge age difference between our 2 girls (I know I should be thankful that I am even in a position to have kids!)

Since being on Lialda only, I had flares on and off maybe once every 3-5 months, but (until recently) had so far been able to treat them by using either Colocort (100 mg hydrocortisone) enemas or Rowasa (mesalamine) enemas for a week or two followed by a multi-week taper... having had much more success with Colocort than Rowasa. One time I had to resort to a liquid diet as well as the Colocort, but it worked to bring me back to remission.

Well, things suddenly got worse a few months ago in late Feb of this year... and it's most likely my fault (I kept forgetting to refill my Lialda every day and ended up missing 5 days of dosage! Learned my lesson the hard way I guess...). This time, I got another flare that for some reason was untreatable by either Rowasa or Colocort or a liquid diet.

By early April, my GI doctor (a different one from my initial GI) finally decided I had to start oral Prednisone, 40 mg/day. This is in addition to the 4.8 g/day Lialda I take regularly and the 1 colocort per night I started since the beginning of this flare.

The 40 mg/day of Pred did the trick and my symptoms by and large disappeared (only having very occassional cramping or very very slight blood in my stools...), but I feared what would happen once I began to taper... My GI told me to start the Pred at 40 mg/day for 7-10 days, then taper by 10 mg each week until getting down to 20 mg/day, then to taper by 5 mg each week.

I got down to 30 mg/day about 2 weeks ago, then after 7 days on the 30 mg/day Pred, my symptoms started to rear their ugly heads again... it started with increased cramping and bleeding to a full-on flare up after maybe 11 days on the 30 mg/day. That night I increased the Pred back to 40 mg/day and called the doctor who got back to me just this past Thursday. He said I had to go back on azathioprine, 150 mg/day, and stay on the 40 mg/day Pred for another month before tapering. I told him my concerns that last time I was on azathioprine, it took 3 years to come off of it (and I was a younger 26-year-old back then)... his response to that was that in that case I might end up having to be on azathioprine indefinitely (!!!)... I told him that we want more kids and asked if there's any other alternative... he simply briefly replied that my health is more important and the only other alternatives are the biologic drugs which are usually not preferable to immunosuppressants...

So, this is where I currently am. I picked up my prescription for azathioprine Friday, but I haven't started it yet... I'm afraid of being on this for the rest of my life, which is not what I want. I also fear that we haven't explored all the possible options in the steriods+mesalamine+diet category of treatments. I know that being on prednisone for too long can have far worse side effects than the immunosuppresants, and I don't want to play with fire here by not listening to my doctor... but I just wonder if his advice is really the soundest advice. For example, I did a quick search on prednisone tapering, and I found a medical research article published on PubMed that suggested that an optimal tapering schedule for Prednisone as determined by that specific study was found to be 40 mg for 2-4 wks, then reducing by 5 mg per week until reaching 20 mg/day then reducing by 2.5 mg/week until coming off of it. The tapering schedule my GI doctor gave me was about twice as fast as that.... of course, I'm not thinking of going into his office with that article in hand, and of course I don't have the medical expertise to correctly interpret the medical research literature... but at the same time, reading that makes me wonder if azathioprine can be avoided if I only used a slower tapering schedule for the Prednisone.

Conversely, I also fear that with the current 40 mg/day of Prednisone and 1 Colocort per night combined, I really am getting a lot of corticosteroids, and maybe I really do need to start the azathioprine ASAP rather than experimenting with a slower taper of Pred and being exposed to it for too long.

Finally, my symptoms, while not debilitating (I can still do my day-to-day activities) are very painful and time-consuming ( I probably spend 2 hours at least per day in the bathroom).

I guess all of this didn't really converge to a question... but I guess my question (for those of you who were patient enough to read to this point), do you guys have any advice? Should I seek a 2nd opinion? Listen to my current GI w/out question? Or just try a slower taper myself in case it works before restarting the azathioprine?

Sorry again for being so long-winded. I'm very worried about what I should do and getting very down about my current situation. Any advice anyone has at all, small or large, would be immensely helpful. Thanks again for hearing me out.

-Sam

Post Edited (Bayesian) : 5/5/2014 1:01:02 AM (GMT-6)

Bayesian said...
He said I had to go back on azathioprine, 150 mg/day, and stay on the 40 mg/day Pred for another month before tapering. I told him my concerns that last time I was on azathioprine, it took 3 years to come off of it (and I was a younger 26-year-old back then)... his response to that was that in that case I might end up having to be on azathioprine indefinitely (!!!).. I had flares on and off maybe once every 3-5 months

Obviously the Lialda isn't enough (you kept flaring every 3-5 months and you cannot taper off of pred). So, yes take aza indefinitely. I think you were foolish to taper off of aza in the first place.

Bayesian said...
Actually being on azathioprine was very unsettling, since (as those who take it know) not only is it one of the more "toxic" meds.

Aza is quite safe when used in UC dosages and it helps a lot of people with their uc and keeping it under control. Aza reduces the white blood cell count in your body, and you are monitored to make sure that count doesn't get too low. White blood cells, specifically t-cells are the immune system's attack dog. Those t-cells are attacking the lining of your large intestine and thus causing inflammation, ulcers, diarrhea, urgency, pain, and so forth. By reducing the count of white blood cells there is less inflammation created. Many people have been on aza for 10 years or more without issues, it can be used as a maintenance drug for uc indefinitely.

Bayesian said...
I found a medical research article published on PubMed that suggested that an optimal tapering schedule for Prednisone

The prednisone taper rate is very individual. It all depends on how well you are healed, and whether you can safely get off of pred without returning to a uc flareup. Your GI should adapt your taper schedule based on what is working for you. The key is you need a strong enough maintenance med to get off of pred and stay off of it.

How long is too long on corticosteroids? It's very subjective. Certainly, over a year continuous usage is bad at any dosage (pred, steroid enema, whatever). Serious side effects can occur in less than a year, it can take multiple years, varies person to person. I wouldn't worry about a few months though.

Sorry, but remission should last a year or more. If you have less than a year remissions, to me that spells out loud and clear that you need a better uc maintenance medication. I'd say it is much worse to be flaring regularly like that, than to be on aza. The simple fact of the matter is that each time your uc flares up, it can spread in extent and severity. Do you want pancolitis (your whole large intestine inflamed by uc)? Do you want to go from a rather mild case of UC to a severe case of uc? Then keep flaring up regularly and that soon might be your fate. You are much better to be in remission for a long time with aza, then go through this frequent remission and then flareup process. Steroids are dangerous if used all of the time, and they can fade in effectiveness the more you use them.

Bayesian said...
Also, it was my GI doctor who told me to taper the azathioprine once I was feeling pretty well after being on it for a few years (I didn't do it independently). That means he himself thought it's best not to be on a such a strong med if it wasn't necessary.

GI's can say some pretty stupid things. If you find something that works then you do not want to reduce your medication. I would get a second opinion from another GI on that point.