Feel like I'm going to be stuck on pred forever

I hear you, on my worst flare I danced with the pred-devil for a full year at various dosages, dropping cautiously only to have to jump up again. Frustrating to say the least. During that period I was like you, 4-5 bms a day. It sucks through-and-through, been there, hated it, and have it a scathing review on yelp/travelocity lol.

I think the reality is you need to stay on 30+ mgs (or whatever dosage means you aren't struggling) a day of pred until the imuran kicks in. So, I would not recommend attempting a taper at all for another month, at least. Its just too early into Imuran to do this. You've got an increase in disease severity and/or extent, so getting to lower dosages of pred is only going to return you to a flareup, until more powerful maintenance meds kick in. Unfortunately, there is no easy-button, or fast-pass out of it all. Many here have been there, can empathize, and relate with our own similar stories.

Pred side effects mean trouble sleeping, irritability, water retention, and an insatiable appetite. All you can do is try and mitigate them as best you can. Limit salt intake (reduces water retention), surround yourself with health snacks (and ban junk food from your pantry), and try and catch yourself when you're about to snap. I was a powder-keg, ready to blow up at any moment, and tried my best to stop myself when I was getting worked up over little things, a constant chore (whether talking to my wife, coworkers, or causal acquaintances). Do some light exercise, increase your calcium and potassium intake. If the sleep issue is bad enough, and you need a good night's sleep, then ask for some Ambien or another sleep aid.

Thank you so much both of you . Ipoop I think you are right . I'm going to stick on a high dose of pred for a while. No point tapering for symptoms to come back and then have to go back up. I just hope the imuran will work for me. Unfortunately it's giving me headaches and making me feel sick. I'm managing to sleep better which is a godsend but still feel jittery on pred.

Unfortunately don't really know but I suspect given my symptoms recently that it is lower down. I have asked my IBD team about alternative enemas but they haven't replied. They're pretty useless here in the UK.

Thanks ipoop. I don't really know what's going on anymore. When I was diagnosed after my scope, it said inflammation was moderate. My recent blood tests and stool sample have come back only showing minor inflammation. I just really hope imuran will work for me.

The best you thing you can do is look at week-to-week rather than day-to-day for determining progress or lack thereof. As daily variation is very wild and unpredictable, as you say. Perfectly normal to have two good days followed by two bad days, even though that is totally infuriating and frustrating, and sends our anxiety soaring. I even had bm-to-bm variation, where I would have a solid bm and be happy, and not 30 minutes later have another poop that was pure diarrhea and sent my emotions into a tailspin.

For example, as I healed, I would start a week with 4 mushy bms on average. Throughout that week I would have a couple solid bms, but the rest would be mushy. Subsequent weeks, my solid bms were becoming much more frequent until they finally became the norm. Even in the weeks where I mostly had solids, I'd still have a couple bms that were loose. Bad days always happen. You're looking for a trend of improvement, regression, or plateauing over a longer time scale then you are currently considering.

Predictability and certainty are two things we cannot have during flares, as we heal. Even though that is ALL we want and crave.

Thanks for your replies. Just an update. I've now had to come off azathioprine due to severe side effects but have been approved for humira. Has anyone had success with this? In the meantime I'm just on pred but I've now been given some steroid enemas think budenofalk .

I think Humira is a better option since you need relief quickly. There are loads of Humira success stories here, people usually leave once they are stable on Humira (or another TNF blocker). You should know if it's going to work for you quite quickly. Steroid enemas are a good addition as well. Good luck!

Hope you get your approval quickly and it works well for you!

Thanks everyone. It's now been suggested I try 6mp 50mg as well as humira. Just wondering what people's experiences of this are? Also does anyone else struggle with very bad fatigue? just tapered to 30mg pred today and have been told by my consultant to taper by 5mg every 5 days come what may as he just wants me off them now but obviously I'm worried my symptoms are just going to come back. I don't know whether the steroids are causing fatigue or something else?

Azathioprine can cause fatigue as a rare side effect. But there are so many different things that can have fatigue as a symptom, including the colitis itself. Other culprits are b12 and iron (for example), but you can get a blood test to see if those need addressing.

ribbon23 said...
I'm also a wary of trying 6mp but it is only 50mg compared to 125mg aza?

Yeah 6MP dosages are roughly 1/2 of the Azathioprine dosages. So, if you were on 125mgs of aza, then 6mp at 62.5mgs would be about right (given that tablets are often 50mgs each, and they might round up or say use 1/2 tablets).

Imuran is dosed at 2.0 to 2.5mgs per kilogram of body weight, and 6MP is 1.0 to 1.5mgs per kilogram.

So, above dosages are right if your body weight is between 110 pounds (or 50 kilograms) pounds and 138 pounds (62.5 kilograms).

Post Edited (iPoop) : 3/8/2019 7:17:04 AM (GMT-7)

Have you discussed with your doctor about the prednisone doses? When it became clear that pred alone wasn't going to fix me, I always took the lowest dose I could manage, even though that meant living with various colitis symptoms including blood. That being because of the risks of higher doses outweighing the consequences of the colitis symptoms. I did get off pred eventually but it took 22 months - and I would attribute the long time in part to the hospital not managing me very well (i switched hospitals after the 18 month mark, and with the new hospital they got me off pred pretty quickly).