Long term side-effects of Asacol?

[Cat-a-Tonic]

My GI put me on Asacol a few weeks ago, and is now apparently changing his mind and wants me to stop Asacol and try something else. His reason was, that "Asacol can have long-term side effects." He didn't say what those were.

I had done my reading before I started Asacol and I am not aware of any long-term side effects. Is my GI just jerking me around or are there long-term potential side effects? I'm getting really sick of my GI putting me on a med and then yanking me off it a short time later because he changed his mind (he did this before, with pred). Answers appreciated, thank you!

 

[Crohn's 35]

Hey CAT wow you are being scewed over, I was never on Asacol by my sister lived on them for years, no apparent sides that she reported back in the day.. I was on Pentasa but too mild for me.

Was the Asacol working? Your gi could be apprehensive about giving you drugs for some disease he isnt sure you have. It is called cover your butt and cover your butt.

Pred isnt good anyways, you know that, good you are off that anyways. How did you feel on Asacol??? :hang:

 

[Cat-a-Tonic]

Thanks Pen. Yes, Asacol has been working really well for me! I had a GI appointment a few weeks ago, and at that time I asked to try Pentasa. He decided Asacol seemed a better fit for me and said he'd write me a few months' worth of prescription for it, and that I was to call him after a few weeks and let him know how I was doing. I did well, and after a few weeks I called to let him know that, and to request that I continue on with Asacol. But for whatever reason, at that time he was like, "Well I don't like the long-term side effects of Asacol, so I want you to try this other medication for a week and see if it works for you." (I don't remember the name of the other med - and he didn't put in a prescription for that, so I left a message with his office earlier today hoping to get all this straightened out.) So, I'm a bit confused and upset. I would really prefer to stay on Asacol than to go off of it and try yet another med. It's frustrating! And he is taking his sweet time returning my call, I called his office 4 hours ago. Ugh.

And for the record, at my appointment a few weeks ago, although he still can't diagnose me fully, my GI did say that he definitely feels I've got IBD. Entocort worked so I most likely have terminal ileum involvement. So it's not much of a stretch to say that Asacol is an appropriate long-term med for me, and I don't know why my GI is being such a flake.

 

[Mayflower537]

I wonder what he could possibly want you to try that wouldn't fall under the IBS category of meds? Esp if it's a week trial. You would think that your doing well on Asacol would have assuaged some of his fears of giving you a med for a condition you don't have.

 

[Crohn's 35]

I would tell him if he were my doctor, to either stay on Asacol or Pentasa... it is one of the most milder drugs, and it is YOUR body... if it ain't broke don't fix it!!!

Am I right??

 

[bushydougie]

Hi Cat.
I've been on Asacol since the first time I saw my GI 18 months ago. When I hadthat first meeting he didn't know what was wrong with me (of course he still doesn't know but like you he believes I have cd of the small bowel) but thought I had cd. He put me straight on Asacol as he said that even if it didn't work there would be no harm in being on it. I don't think I've had any side effects from it and can't remember reading about any real side effects that can be caused by it.
Your GI seems a real maverick in terms of medication. I hope you get to stay on it. I've no idea if it really helps me or not but my GI assures me it does me no harm so I've quite happy with that!
Sam

 

[Cat-a-Tonic]

Thanks all. I still haven't heard back from my GI so I have no idea what's going on. (I called his office again and was told that he's only in the office 2 days this week, and he's not in today and apparently not tomorrow either, but the nurse is trying her best to get ahold of him wherever he's at.)

Sam, that maverick comment made me laugh. Yeah, my GI is not exactly the type to hand out medications easily! And he changes his mind fairly often too. I never quite know what to expect from him - one appointment will be not very good, and then the next appointment with him will be great. I'd been pondering getting a 2nd opinion but then my last appointment with my GI was wonderful - that was the appointment where he put me on Asacol and said that I've got IBD. But now he's gone right back to not so good again. Hmmm. I just don't know!

 

[Feather]

Cat,

I've been on Asacol since I was diagnosed 8 years ago (originally 1600mg/day, now 2400mg/day), and I'm not aware of any long-term side effects (that's certainly not to say that there aren't any, as all drugs I'm sure have effects, but compared to having active Crohn's or other serious medications, it's much better). Asacol is one of the mild drugs -- not systemic or immunosuppressive. If it's working for you, I would really push your GI for more information about why he wants to take you off. Let your doctor know that you're informed, and make sure you're satisfied with his responses -- keep asking until you get the information you need.

 

[Cat-a-Tonic]

Thanks Feather. I'm definitely trying to make sure I'm as informed as possible so I can ask my GI all the questions I need to when he does call me back. Part of the problem is that I'm technically undiagnosed, but the last time I saw my GI he did say that he thinks I have IBD. I don't have UC because I don't bleed, so it's either Crohn's or possibly microscopic colitis (I've thought Crohn's all along, and I respond well to pred and Entocort as well as the Asacol). My GI had me on Entocort for 7 months and being a steroid, that one's obviously stronger than Asacol, so I really don't understand why he's trying to take me off of Asacol now.

By the way, I love your pic - luna moths are very cool!

 

[Feather]

Yes, that's definitely interesting that he seems to be inconsistent with meds. I hope you get an answer (and a diagnosis!) soon!

By the way, I love your pic - luna moths are very cool!

Thanks! I was lucky enough to come across one this summer -- they're so beautiful!

 

[bushydougie]

Cat - maverick was the most polite word I could think of to sum him up!
He sounds hormonal. I hope you manage to persuade him to keep you on Asacol

Sam

 

[sam1]

Hi Cat, Ive been on Asacol for bout 20 years with no side effects and no flare ups for years, i used to take 6 a day but for bout 10 years im down to only 2 a day! Also love your cat! lol

Sam

 

[Natalie38]

Hi Cat,

I was put on Asacol in July, 2 pills eight times a day. I was also told by GI thast I would need to take these for the rest of my life. I was in a bad flare at that time. They really helped! So, about a month ago, I started to only take 4 a day too see if it would matter. No, I never consulted my GI, but this is a pattern with me, i do not like taking pills, and when I feel ok, I don't think to take them. Anyways, Agfetyr cutting my dose down it only took a few weeks and I was feeling sick again, so much pain up my bum, bloody poops, and up at night in pain and naseous. NOT FUN. I was so dissapointed in myself.
So, lesson learned, ASACOL works! And, yes, I am back on to my 8 pills a day and feeling much better.
As far as long term side effects, I was never told of any. I do believe that there are other meds others on this forum take that are much more of a concern long-term.

Keep with the Asacol if you can.

Cheers

 

[teeny5]

I was never told of any long term side affects for Asacol?!?! Sounds fishy to me. My GI said I will be on a maintenance drug forever, no matter how good I feel, to help keep me in remission. I only changed because I am trying to have a baby.

Also, how can you know how a medication affects you a after only one week!!! That's insane!

Good luck with the meds.

 

[Cat-a-Tonic]

Thanks all. I still haven't gotten a straight answer out of my GI regarding Asacol & long-term side effects - have called him every day this week and spoken with multiple receptionists and nurses, but my GI hasn't bothered to call me back yet. I'm really starting to think it's time to find a new GI! This one hasn't been able to diagnose me and this isn't the first time that he's taken forever to return a phone call. I'm going to wait and see what my GI has to say about Asacol, then I'll make my decision as to whether to stick with him or find a new doctor.

 

[bushydougie]

Sorry to hear that Cat. I went to see my GI yesterday. He has agreed to let me stay on entocort (and I'm going to get the pill cam but have a 6 months wait!). At end of the appointment he said that the entocort more than likely works and that the Asacol probably doesn't do anything for me!! but to stay on it anyway.
I'm not really sure what to take from that comment but I was so relieved he kept me on the entocort I didn't really care!!
Hope all goes well for you when you eventually get to speak to him
x

 

[Cat-a-Tonic]

Thanks Sam! My GI actually called me back (on a Friday afternoon - I thought I was going to have to call him at home or wait until Monday!). He and I discussed things and I basically put my foot down and said I want to go back on Asacol. His concerns about long term side effects were that he said a small percentage of the population develops kidney problems or pancreatitis from Asacol. We worked it out so that we're both satisfied with the situation - I'm going to go back on Asacol and will call him in 6 weeks time to let him know how I'm doing, and I'll call him again another 3 months after that. So he can keep tabs on how I'm doing, and I can stay on Asacol. Yay!

I'm pleased, I did feel a definite difference when I started taking Asacol - like a calmness to my guts, less cramping and I felt no LRQ pain at all when I was on it. When I stopped the Asacol earlier this week, the cramping and LRQ pain came right back. So I'm hoping it goes away again now that I'm allowed to take Asacol again.

 

[bushydougie]

I'm so glad to hear that Cat. Hurray!!
I did notice when I first started Asacol (it was the first actual medication I had for this) that my bms did firm up somewhat. I do hope you continue to feel the benefit from it.
Take care
Sam

 

[toml99]

Good for you, Cat. We each have to be our own advocate for our health, and it's good to see you take the initiative on this.

 

[Colitisa]

Asacol is extremely expensive. If you belong to an HMO, your doctor may have been advised to prescribe something else.

 

[thefalk]

Hey Cat, I have been on asacol a couple years. Only side effect I might suffer is soreness in my upper arms. thefalk

 

[PVail]

Hi Cat
Ive been on Asacol now for 18 months and I am also undiagnosed apart from suspecting TI inflammation and lately appendix pain. I have noticed some side effects since I have been on it . Some joint pain and head aches but thats all. This week i have been experiencing really bad LRQ pain and have been with a new Doctor . She really took time to talk about my condition and quite openly told me not inflamation is easy to find and it can also be sporadic . I asked her about the Asacol and she told me to keep taking it if it helps.
Well if i dont take it I get Bloody stools, Big D, cramps , ichy skin ,sore eyes and nausea. So any side effects are out wayed by the advantages of taking it regularly.
I have tried cutting it out and to be honest ,that was a mistake as It took several weeks to get it under control again. So i personally dont care if they put a label on my symptoms but I am very gratefull for Asacol.

 

[rollinstone]

its weird that he put you on a trial for it for a few weeks... 5ASA's generally take 5-6 weeks to become effective (or so I was told by both the GI and GP). Maybe its time for a second opinion? I don't want to take anything away from your current doctor, but its important as patients that we get the BEST care possible.