Hi there
I was wondering if anyone has had any problems with mesalamine, i.e. Pentasa or Asacol?
I was put on Pentasa when I was first diagnosed around July time last year. I had to stop taking it after about 8 weeks because it was making my symptoms worse (worse diorrohea, worse pain) and because it was also (weirdly enough) making me wet the bed. To cut a very long story short I was then put on predisolone for 3 weeks, 6mg Entocort for 2 months and now I have been on 9mg Entocort since the end of December.
The full dose of Entocort is going really well for me – since I have been on the full 9mg dose I have felt so much more well – my diorrohea frequency is way better (around 4 times per day rather than 15+), my pain is a lot better and my general discomfort after eating etc (e.g. bloating) is way better too - my stomach has felt like it hasn’t been there (I guess as it should feel! – being able to roll around in bed again has been glorious!). The 6mg Entocort I was on for 2 months did not work so well.
However, as I am sure you all know – I cant stay on the Entocort for much longer. I have discussed immune suppresents with my GI specialist, but he recommended we try Asacol first, to see if that maintains my remission as I come off the steroids. This option is a lot more preferable to me than immune suppressants, for obvious reasons.
I started 400mg Asacol oral twice daily 2 weeks ago. We upped this to 800mg twice daily after one week, and today I am due to up it again to 1200mg twice daily. We have introduced it slowly to see if I can tolerate it because of the problems I have had with Pentasa, rather than starting on full dose straight away. We were hoping that the different release characteristics of Asacol compared to Pentasa may help me tolerate it better. I haven’t started tapering the Entocort yet – I am due to taper back to 6mg as of Monday.
The problem is is that the Asacol has made me feel really crap. Week one on 400mg twice daily was okay- I felt pretty nauseous a lot of the time but rode it out. However, week two (this week) on 800mg twice daily has not been going so well. The nausea has been a lot worse (I have been vomiting on occasions), my diorrohea frequency has increased again (I have had to go back to taking a fair amount of Immodim again) and sadly – I have been wetting the bed again (bad times when you are 25!).
I am not sure what to do now – I am supposed to be going upto 1200mg twice daily today but to be honest I am too scared to. I took 800mg this morning to get me through today at work without potentially being ill from 1200mg, in the view to take the higher dose tonight/over the weekend encase it doesn’t go so well so it doesn’t interfere more with work.
I feel that currently, on 9mg Entocort I shouldn’t be experiencing these symptoms because I have been a lot better the past few weeks before the Asacol. I am almost certain that my symptoms are because of the Asacol. Theres no reason why my frequency and pain should be increased again and no reason why I should be on Imodium again.
The thing is is that I obviously really want to try the Asacol as much as I can before putting my hands up and saying that I cannot tolerate it because Asacol seems to be the only option before looking at immune suppressants, and obviously Asacol is a much milder (and consequenty preferred) drug than immune suppresents. Its hard to find the balance between trying, but also accepting that it isn’t working. How much do you try?
I was wondering if anyone had any similar experiences with mesalamine based drugs. My initial reaction at the thought of taking Asacol was that I would have the same reaction as I did with Pentasa and I was worried about trying it. But I told myself that it may not be the case and that I should give it a try with an open mind, which I have been trying my best to do. I knew that if I thought I wouldn’t tolerate it, then its most likely I wouldn’t, so I have been trying to be really open minded and hopeful.
I don’t know what to do now because I am also concerned that when I start tapering down my steroids next week, it will be hard to distinguish between any relapse type symptoms and Asacol reaction type symptoms. I don’t want to think I am relapsing when infact its my intolerance to Asacol… because I am open to the idea of coming off the steroids and being okay, in which case not needing immune suppressants. But I don’t want to attribute my symptoms to relapsing and then looking at immune suppressants, when really it’s the Asacol, if that makes sense.
I hope this all makes sense, sorry its gotten so long. If anyone could advise on similar experiences that would be really helpful. I am just not sure what I am best to do and at the moment I am at a stage where everyday counts!
Thank you so much for your time
Em x
I was wondering if anyone has had any problems with mesalamine, i.e. Pentasa or Asacol?
I was put on Pentasa when I was first diagnosed around July time last year. I had to stop taking it after about 8 weeks because it was making my symptoms worse (worse diorrohea, worse pain) and because it was also (weirdly enough) making me wet the bed. To cut a very long story short I was then put on predisolone for 3 weeks, 6mg Entocort for 2 months and now I have been on 9mg Entocort since the end of December.
The full dose of Entocort is going really well for me – since I have been on the full 9mg dose I have felt so much more well – my diorrohea frequency is way better (around 4 times per day rather than 15+), my pain is a lot better and my general discomfort after eating etc (e.g. bloating) is way better too - my stomach has felt like it hasn’t been there (I guess as it should feel! – being able to roll around in bed again has been glorious!). The 6mg Entocort I was on for 2 months did not work so well.
However, as I am sure you all know – I cant stay on the Entocort for much longer. I have discussed immune suppresents with my GI specialist, but he recommended we try Asacol first, to see if that maintains my remission as I come off the steroids. This option is a lot more preferable to me than immune suppressants, for obvious reasons.
I started 400mg Asacol oral twice daily 2 weeks ago. We upped this to 800mg twice daily after one week, and today I am due to up it again to 1200mg twice daily. We have introduced it slowly to see if I can tolerate it because of the problems I have had with Pentasa, rather than starting on full dose straight away. We were hoping that the different release characteristics of Asacol compared to Pentasa may help me tolerate it better. I haven’t started tapering the Entocort yet – I am due to taper back to 6mg as of Monday.
The problem is is that the Asacol has made me feel really crap. Week one on 400mg twice daily was okay- I felt pretty nauseous a lot of the time but rode it out. However, week two (this week) on 800mg twice daily has not been going so well. The nausea has been a lot worse (I have been vomiting on occasions), my diorrohea frequency has increased again (I have had to go back to taking a fair amount of Immodim again) and sadly – I have been wetting the bed again (bad times when you are 25!).
I am not sure what to do now – I am supposed to be going upto 1200mg twice daily today but to be honest I am too scared to. I took 800mg this morning to get me through today at work without potentially being ill from 1200mg, in the view to take the higher dose tonight/over the weekend encase it doesn’t go so well so it doesn’t interfere more with work.
I feel that currently, on 9mg Entocort I shouldn’t be experiencing these symptoms because I have been a lot better the past few weeks before the Asacol. I am almost certain that my symptoms are because of the Asacol. Theres no reason why my frequency and pain should be increased again and no reason why I should be on Imodium again.
The thing is is that I obviously really want to try the Asacol as much as I can before putting my hands up and saying that I cannot tolerate it because Asacol seems to be the only option before looking at immune suppressants, and obviously Asacol is a much milder (and consequenty preferred) drug than immune suppresents. Its hard to find the balance between trying, but also accepting that it isn’t working. How much do you try?
I was wondering if anyone had any similar experiences with mesalamine based drugs. My initial reaction at the thought of taking Asacol was that I would have the same reaction as I did with Pentasa and I was worried about trying it. But I told myself that it may not be the case and that I should give it a try with an open mind, which I have been trying my best to do. I knew that if I thought I wouldn’t tolerate it, then its most likely I wouldn’t, so I have been trying to be really open minded and hopeful.
I don’t know what to do now because I am also concerned that when I start tapering down my steroids next week, it will be hard to distinguish between any relapse type symptoms and Asacol reaction type symptoms. I don’t want to think I am relapsing when infact its my intolerance to Asacol… because I am open to the idea of coming off the steroids and being okay, in which case not needing immune suppressants. But I don’t want to attribute my symptoms to relapsing and then looking at immune suppressants, when really it’s the Asacol, if that makes sense.
I hope this all makes sense, sorry its gotten so long. If anyone could advise on similar experiences that would be really helpful. I am just not sure what I am best to do and at the moment I am at a stage where everyday counts!
Thank you so much for your time
Em x
