• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Improvement but not remission yet - how long to persevere?

Hi everyone!

Brief history: Diagnosed with Crohn's Colitis nearly four years ago. After a bit of tinkering with meds I was well controlled on a combination of Mezavant and Azathioprine for two and a half years. I stopped the Mezavant (with GI's agreement) about 9 months ago due to fatigue and muscle aches and this helped me feel better.

Unfortunately, after 6 months just on the Aza my symptoms (mainly rectal) gradually returned. Pentasa supps helped a lttle bit.

I started Salofalk granules eight and a half weeks ago and although things have slowly improved I am still not back to my 'normal'. I just don't know whether to carry on and hope that the improvements will keep slowly heading towards remission, or whether to ask for a blast of prednisolone to knock it on the head (which was what I needed first time round, although I wasn't on the Aza then).

I can't increase the Aza as my lymphocytes are already pretty low (around 0.7).

So I guess this is a "What would you do?" question for anyone that might be able to help.


I don't know what the right answer is, but I would bring up the prednisone thing to the Dr. I bugged and bugged mine to change my meds when I felt like I wasn't getting anything really out of them. Maybe your dr will know of another option that might work. Or different combo of meds.
Thanks Teeny5

I suspect that I may need the pred just to nudge things on a bit and then I could get back to settling on the mesalazine/Aza combo that had been working before. It's just that steroids are not something I want to take lightly, and although I coped well on them first time round with few side-effects, I don't know if it would be the same again.

I'm wondering if anybody here has managed to get back to remission on mesalazine, or whether there's always something else needed first. The dilemma is that I have improved, but I don't want to carry on indefinitely with low levels of inflammation as the risk of the damage from long-term mild inflammation worries me, too.

As I write this, I realise that I am pretty much telling myself what I need to do, and what I probably would be advising someone else to do if they asked me the same question!!

I will try to get in touch with my IBD nurse next week and see what she says.
Usually drugs like mesalazine (5-ASAs) are maintenance drugs and not effective in achieving remission, but rather maintaining remission. My GI monitored progress through blood tests. So at times I may have not felt a ton better, but my blood work gradually got better, and better. I got to remission with Entocort, now on Colazal to try to maintain it for as long as possible.
I'm the opposite - my bloods have never shown up anything that reflected my symptoms. Thankfully I have a very pro-active GI who has so far always been ahead of the game and pre-empted what I would need before I needed it! I don't know what the nurse will say, but I suspect the GI will favour a stronger approach.

Lady Organic

Staff member
8 weeks is quite long since you reintroduced 5-ASA. (My GI would try to treat with 5 ASA only, to induce remission for UC or indeterminate colitis). Not sure for clear Cd colitis. people can react different to 5-ASA and some very fast, It helped me fast within days, but not entirely.
I'd go for pred now in your case, but If you know where your inflammation is and if it is in sigmoid and rectum only, you could try Hydrocortisone enemas or Cortifoam to avoid the systemic distribution of cortisone with pred.
Thanks Lady Organic,

I think I will be asking to try the pred. I'm not really keen to go messing about with enemas, although it is a good suggestion - the suppositories are enough for me!! Also, when I was originally going through this 3 years ago my symptoms seemed to be rectal then, but the scope showed patches of inflammation at numerous places all the way up to the ileocaecal valve, so I would feel more confident that the whole colon was being targeted, rather than just the end of it.

It's difficult to know what to do when I have a bad day followed by good ones, then bad again. On the good days, steroids seem like unnecessary overkill, then other days I just think I need to do something about it.
Nitty, I'm down to five prednisolone tabs this week, reduced from eight. This is only my second time of using steroids and although I know they're necessary I was very disappointed to have to start on them again, particularly after feeling so dreadful on them last year.
However.....this time the side effects have been remarkably less, very few hot flushes, only a day or two of heavy legs and arms, the fidgety feeling after about an hour of having taken them wears off very quickly. The only side effect which really bothers me is chronic indigestion which is going to be investigated.
If you and your IBD team decide you need them again, which I suspect you will, then take heart, it may be that you too will not have quite the same reaction and cope better, I do hope so :)
Bunty x
Thanks Bunty (Fab name!)

I wasn't too bad on the pred last time, but my mum has been on it and had really bad moonface. My main issues were mental - for some reason I lost the ability to do basic mental arithmetic (?!), and I had quite bad tremors. But I would rather put up with that for the short-term than risk long-term damage from the disease.
I'm on 125mg per day, which is a little under the optimum dose for my weight (approx 65kg), but my low lymphocyte level means the GI won't increase that.

Lady Organic

Staff member
im in the same boat with 6-mp. Im stuck at initial dose for the same reason. ive been splitting my dose in 2 during the day. i will see if that can make a difference in my blood report next time.
if you are on the generic aza and your insurance can pay the Imuran, i'd ask for it, my GI prefers imuran over its generic.
I have a feeling I'm going to be taken off aza and tried on 6 mp instead, some liver enzymes are raising weekly apparently and I'm only on 25mg of the stuff. I've also been getting joint pain in my knees, one wrist and one elbow, and breathlessness yet again..I was taken of pentasa due to breathlessness.
I agree with you nitty, worth putting up with some short term discomfort for the long term benefits of pred.
It's interesting..and reassuring & scary in equal measures..to read what others are experiencing with all this IBD stuff 😕
Bunty x (Bunty was a comic I used to read many, many moons ago)