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Conflicting GI treatment advise

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Crohn's Disease
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Posted 5/10/2011 1:47 AM (GMT 0)
My Daughter has recently transitioned from Pediatric to Adult. She has had some recent problems, which has led our Ped. GI to suggest that Imuran may not be working anymore, and that it was time to step up to Remicade. Our new Adult GI feels, her bloodwork is fine, and she presents reasonably well, which indicates that the Imuran is doing it's job. She wants to stay the course with Imuran. 

It leaves me somewhat confused. Does anyone else ever get opposing views with different GI's? Interestingly enough, they both feel that Pentasa is useless, and to stop taking it. I know there are plenty of people that swear by Pentasa and other 5ASA's. I'm just relating our experience. 

Posted 5/10/2011 2:25 AM (GMT 0)
i was a talk a few years ago presented by the CCFA where there were two different doctors, who at different talks, both said that 5-ASA drugs are really nothing better than a placebo for crohn's disease, statistically speaking. for some people they may help, some experience a placebo effect, while others (myself included) have no clinical response (oddly though they do seem to provide relief for those suffering from UC). anyhoo, my advice on 5-ASA drugs for having taking virtually all of them in many different forms for about 14 years is to not take them if you are on crohn's and you do not notice any benefit at all. why spend the money and take pills and experience potential side effects for something you have no idea is working and actually believe is not working?

as for the other part of your question, that is medicine. every doctor will have an opinion. you have to be your own doctor and take charge cos doctors truly can only provide a professional opinion based on their schooling and experience. that is why multiple opinions is very helpful cos each doctor can provide different insights and options and opinions. but at the end of the day it is up to all of us to be responsible for our health.
Posted 5/10/2011 2:59 AM (GMT 0)
There's an article linked on the UC forum here that summarizes recent studies of medical treatments for IBD. You might find it interesting.
Posted 5/10/2011 3:15 AM (GMT 0)
Hi
I wonder what you think Gail on this subject.
I have seen some of the studies and pentassa is really not that much better than a suger pill. I am even on a low dose 3 x 500mgs.
However, I still take it because of what you and others have said about stopping, so your opinion would be appreciated
Davee
Posted 5/10/2011 3:34 AM (GMT 0)
Over the years, I have been very frustrated by doctors and their opinions. I use to be foolish enough to think they should know what they are talking about. At our hospital, 25 GI doctors would rotate so you might be lucky enough to get two opinions in the same day. Now, it almost amuses me. Ask the same question to 50 different ones and you'll get 50 different answers. Researching your questions yourself is a much wiser step.
Posted 5/10/2011 9:22 AM (GMT 0)
I think CrazyHarry sums it up very well. It's up to us to be "responsible for our own health". 
Posted 5/10/2011 9:30 AM (GMT 0)
Son was diagnosed at 16 and went straight to adult care so have no experience of different opinions with GIs.

What I can say that we too were told to stop pentasa as it was not needed because son on Azathioprine. Tried stopping it one, ds was bad(GI said co-incidence) few months later tried coming off it a 2nd time, again son was bad(took much longer and double dose of pentasa for quite some time to stabilise again) and so now GI has conceded that son needs to take both and has noted his records accordingly.

Obviously everyone is different though.

Posted 5/10/2011 1:37 PM (GMT 0)
I have had this freaking disease for nearly 36 yrs and always been treated with a 5 ASA and Prednisone. While the 5asa meds may not work for some they DO work for me and quite a few others on this forum. CrohnieToo another mod here, takes Imuran and Pentasa. Everytime she tries to get brave and quit the Pentasa within a very short time her Crohns returns. She goes back on it and things quiet back down. If I don't take my Asacol I get sick and I take no other Crohns meds.

So they can say what the want, these meds do work for some. And its most definetly NOT a placebo affect. I will stick with my Asacol.

So go ahead quit them, and see what happens. JMHO
Posted 5/10/2011 4:52 PM (GMT 0)
5ASAs have been keeping a relative of mine in remission for 15 years and she doesn't do any diet or other treatment.

I just had another resection, and I am not giving up pentasa because "some" research suggests it "might" not help. There's other research that says it does help. It probably depends on the study, the patient, the course of the disease, and who knows what else. Pentasa hardly, if at all, absorbs into the blood stream, so I think it's worth a try, even if it only helps a little.

I have to say, I don't think it is responsible to "doctor" yourself. MDs are not alone. They receive colleague advice and guidance, have access to knowledge and information that has been collected from and attained by medical institutions all over the world for years and years, aside from years of professional hands on training.

I think it's more responsible to keep an open mind and explore other treatments, even if they're unconventional, but in conjunction with your doc.

After all, Crohn's Disease is named after the gastroenterologist who first described it in 1932.
And some interesting info: he is also the first doc to think CD (was) is caused by a pathogen, specifically MAP.
Posted 5/10/2011 4:57 PM (GMT 0)

Doctors are free to make blanket statements about drugs if they want to, but they should also point out that there are always exceptions.  Especially with this disease...I have been amazed over the years by how differently everyone responds to everything...drugs, foods, environmental triggers, etc.  My Crohn's is definitely not within the "norms" nor is my reaction to many drugs. 

73monte, Pentasa didn't do anything for me, but your daughter definitely shouldn't stop it without being on something else.  Only you and your family can decide if you think the Imuran is keeping the Crohn's in check enough or if you think it's better to try Remicade.  All doctors have a different degree of what is acceptable to them...one may think your daughter is good enough while the other knows it's possible to get her better and wants to do whatever possible to get her there.  We all have to figure out what amount of sickness is "acceptable" to us and this will help us weigh the risks and benefits of some potentially dangerous drugs that are out there. 

Posted 5/10/2011 6:13 PM (GMT 0)
Just a gentle reminder to all!!

4. Use good judgement. NEVER rely on information or opinions exchanged via the forums or chat rooms to replace necessary, personal consultation(s) with qualified health or medical professionals to meet your individual health or medical needs. Remember that what's right or has worked for one person may not be what's right for you.
Posted 5/10/2011 7:44 PM (GMT 0)
My doctor recently said the same thing about Pentasa. Was something recently published about this in a GI journal?

Here's my question: there is no cure. Only temporary remissions. When you have a flare, does that necessarily mean that your drug isn't working any more? Can you take the short-term pred dose to get you back in remission and have any hope that the long-term drug can be used again to keep you in remission?
Posted 5/10/2011 7:54 PM (GMT 0)
For me clonehead, usually all its ever taken was adding in Pred for a short time and things calmed down, unless I had too much scar tissue causing a obstruction, then it was surgery. I briefly used 6mp, but had too many side issues with it, so just went back on only the Asacol. But I did stay on the Asacol the whole time I was on 6mp and no issues when stopping the 6mp.

I do have the stricturing type of Crohns, so maybe the 5asa's meds work better for someone with this type of Crohns. All I know is they work for me. Kept me in remission for the past 6 yrs. And as I said on another post I have never used anything other than Prednisone/Entocort and a 5ASA med for my flares. Hugs!
Posted 5/10/2011 8:42 PM (GMT 0)
I go by how I feel on a med. If it is helping me to feel better I'm NOT stopping it. If it makes me feel worse, I am NOT taking it. I do try to give a med a chance either way. No one knows better than we do how something makes us feel. We have to learn to trust our own instincts on something like this. No doctor can know how we feel.

One thing I've learned the hard way: "I" am the one who endures the benefits or the consequences of any med, test or therapy "we" decide to try. If it makes sense to me I am game to try it. If it doesn't make sense to me it "ain't" a gonna happen unless "they" can make it make sense to me. If I'm comfortable w/it, go for it. If I'm not comfortable w/it it "ain't" a gonna happen unless "they" can make me comfortable w/the idea.

Posted 5/10/2011 10:29 PM (GMT 0)
Leaving the Pentasa question aside and moving to the big picture...

Doctors are human too, and base their opinions on their training, subjective feelings, and personal experiences with other patients they've treated. It is reasonable to expect that they are going to have differing opinions from time to time, especially with a disease that tends to be hidden internally, like Crohn's.

Personally, I would be questioning whether it's appropriate to base such important decisions on your daughter's bloodwork, and how she "seems" when she visits a doctor. Many, many, of the people who use this forum have had bad symptoms & internal pathology while still having normal bloodwork, and I'm sure that you, as her parent, will also know that a Crohn's patient can seem fine to a stranger even when she's ill, and that any Crohn's patient can seem "fine" one day and be miserable and in pain the next.

I think I'd be asking whether it might be a good idea to conduct further scopes, MRIs, etc, and basing treatment decisions on those proper clinical findings, rather than her bloodwork and how she looks when she visits the doctor.

Obviously, now that she's in adult care, these questions & decisions will probably be asked & made by the doctor & your daughter, but I can't see any harm in discussing this with your daughter, and maybe the doctor too, seeing as you're her concerned parent and, by the sounds of it, her next of kin and carer too.

Hope this helps.

Ivy.
Posted 5/11/2011 12:22 AM (GMT 0)
I hate to say it.... But I honestly feel my guess of the next medication to try is as good as any specialist ha. I think its a pretty hit or miss thing, for the most part. Thus I dont think it is wrong or that strange that two different specialist have two different ideas. Hang in there : )  
Posted 5/11/2011 12:24 AM (GMT 0)
Clonehead,

You bring up a very interesting question. I too have asked this very same question, and had differing answers. One GI told us that just because symptom present themselves, doesn't mean that the drug isn't working anymore. I would like to know the definitive answer to that though myself. 

If you use a certain drug for 15 years, and you have a couple of flare-ups, then I would suspect that the drug is working. It's just a matter of what varying degrees of effectiveness are acceptable.  

Posted 5/11/2011 12:30 AM (GMT 0)
Ivy6,

Thanks for your response. I should have mentioned that my Daughter did have a recent MRE.

It didn't show any inflammation, but some narrowing. Could have been from previous scar tissue.

Tom.

Posted 5/11/2011 12:42 AM (GMT 0)
Do they have any plans for dealing with the narrowing, Monte?
Posted 5/11/2011 7:51 AM (GMT 0)
I will be inquiring as to whether there is any increased narrowing in the last 2 yrs. Symptom wise, she doesn't have any apparent problems from it. 

Tom.

Posted 5/11/2011 6:48 PM (GMT 0)
I posted the link to the article I mentioned above. All of the medical therapies are discussed in the article. I think this would be a very valuable source of information for you and your daughter.
Posted 5/12/2011 1:01 AM (GMT 0)
Kazbern,

Thanks for posting that link. Very informative and current.

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