20mg of Prednisone not working anymore?

What else are you on besides prednisone?

Pred has been working OK/steady for me, but I tapered down to 10mg and am now continuing to taper after some time at 10mg. I had to navigate anxiety and sleep problem side effects, as well as some mild rage issues. Bone density has been OK, but it is almost 2.5 years now, and I know it will eventually do more harm than good. I am starting to experience some cognitive/memory issues that I think are related to long term Pred.

I have heard others report that many meds, including Pred, did not work as well on a 2nd flare, or sometimes on their latest flare. This is not the "suddenly stops" you asked about, but is a kind of "stops working".

When you think about it, Pred dampens the inflammation response. But the inflammation is a response to the immune system attacking your cells and your friendly gut microbes, and maybe even some food that gets through the mucosal lining. All of this is still happening even though the inflammation has been dampened. It makes sense to me that the immune system might adjust and ramp up when inflammation is dampened. Like fever (we we also routinely dampen) inflammation is intended to be a beneficial short term response to invasion by germs, but too much is not only uncomfortable but actually bad (again like fever).

When you are speaking to someone and they don't hear you because something dampens your voice, you shout. On the other hand, if your voice is muted (vs dampened) there is no point to shouting. If Pred acted as a mute button, it should continue working no matter how loud the immune system "shouts". But, I think Pred acts more as a dampener (by binding to certain receptors), so the immune system might well start to shout, and Pred would seem to stop working. I don't know this medically, but the analysis makes sense to me based on the reading I have done.

Also, your immune system could ramp up for reasons unrelated to Pred failing, such as a virus which broadly activates your immune system. A lot of flu and non-flu stomach bug around right now. Also, there are links between endometriosis and UC, and possibly your condition is changing in that area.

Hopefully something has just activated you immune system, and things will quiet down after a time and it will seem like your Pred is working again. But if you UC is spreading past the left-side, it might not. Remember that Pred does not treat UC, only suppresses the symptoms. This is why fruitgirl's question about other meds is important. Since your colitis was severe, you sure don't want it to spread. Various meds might be valuable if they just keep it form spreading, even if they do not seem to lower your symptoms very quickly.

If my current taper does not work, I am going to explore Budesonide as a safer long term steroid. The new ER version designed to release (and act topically) in the colon is out this Spring. I am sure it will be expensive, but the threat of bone damage, and the possibility of memory problems is something that scares me more than being broke.

Good luck

Some side-efects (e.g., lethargy, body ache) of Imuran/6pm are supposed to go away after a few weeks. I think the only alarming issue that requires lowering dosage or stopping is a spike in liver enzymes. Make sure you blood is tested for liver enzyme levels.

It also can take 6 weeks or more to kick-in. Also, you have to be at a sufficient dose. There is a blood test that looks for the metabolites of 6mp and can tell if you dosage is large enough. Get that blood test too, because no use enduring side-effects for nothing.

It sounds like you had a bad reaction to the sulfur in the Sulfasalazines, but that 5-asa itself just did not seem to work. You might consider a generic form of 5-asa because my experience has been slow (very very slow) but steady improvement. After 18 months on Lialda, scoping confirmed it had cleared my right and transverse colon, even though my symptoms had not improved a lot. I know Lialda is expensive because of its newer MMX technology, but if you can get a cheap 5-asa, and you tolerate it, I would just take it.