MDG. Not to get to political but... Unfortunately, I think you hit the nail on the head. Most of the research and research dollars for this go into drugs to treat the disease. Thats where the money is. Diagnosis or surgical techniques lag behind as they are often only sources for the doctors to write medical papers on. Sort of the way of our monetarily driven system. (note -my views are biased as I work in the medical device/drug industry. With that said, I can still see the fault in the system).

Mike S

Mike S, I agree, however the genetic research that the CCFA is funding has the potential to drastically improve the testing. If they can distinguish between a Crohn's gene and a UC gene, then it'd be easier properly diagnose. While that may happen in my life time, it isn't going to happen within the next few years.

One huge hurdle in identifying the genetic markers for distinguishing Crohn's from UC, is that there are many genes that come into play, some overlapping with both diseases, and they have not identified them all yet. Plus, they may wind up finding more sub-types of IBD. Currently, the feeling is that if they can identify all the subtypes, they may be able to predict who will respond to which treatment, saving time in treatment and not wasting it (and money) with treatments that could not work in the first place. While research is treatment driven for the most part, it makes sense because treatments are limited for IBD and prevention is not a viable option at this point.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=...anel.Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=...anel.Pubmed_RVDocSum

Jan

This message has been edited. Last edited by: Jan Dollar,

Well said Jan. But even if they can identify the subtypes and who will respond to what treatment, I have my doubts on insurance ditching their sacred step-therapy approach.

Take Remicade. There's some evidence that it is more effective when given as an initial treatment. But the insurance companies will never allow that because of its cost. Why spend $32,000 per year on all IBD patients, when they could spend $75 (Prednisone), and effectively treat 15-20% of the IBD population.

I'm opposed to step therapy as a concept. I think it takes away the ability of gastroenterologists to evaluate how severe a person's case is. And I think wasting time on the ineffective, but somewhat cheap, stuff (Flagyl, Prednisone, sulfasaline) probably allows a disease to get worse, often to the point that the big, fancy, and expensive drugs don't work anymore.

If there's even a 1 in 10 chance that the tests are wrong, and that Prednisone draw downs and 5-ASAs can work on a patient that has genetically tested as a refractory case, insurance is still going to require the step therapy. Of course this assumes that insurance doesn't use genetic information to deny or alter coverage. While that would currently be illegal, laws can change.

As a patient, I'm both hopeful for and scared by the genetic research that is going on.

There are always two sides to every coin. Often, the older, and yes cheaper, drugs do a very good job. If they work, then not only do you save money, you also avoid potential side effects of drugs that have not even been realized yet. The longer a drug has been available to the general public, the safer it tends to be. Controlled studies are great, but they are not as good as general population use. We've recently had trouble with drugs that were fast tracked and later found to have serious side effects. Plus, we can't just say that it is the insurance companies that would be spending the money. It all trickles down and our premiums go up if the costs of health care go up.

Prednisone should never be considered a maintenance drug in IBD and should only be used for short periods to induce remission. I agree that sometimes time is wasted with step treatment, but considering the fact that Remicade is not widely effective in UC, the argument for first treatment is a hard sell. Of course, it is possible that waiting until the disease is refractory to everything else is a set up for failure. I know my husband would be very adverse to Remicade infusions since Asacol seems to work pretty well for him, but this was only after failing Azulfidine. He never has taken prednisone, only hydrocortisone enemas. So, it is all very individual.

Probably not a simple solution to any of this and it takes time for progress to be made. But, I do know that in my lifetime, treatment for IBD has exploded. When I was first diagnosed, the only options were steroids and Azulfidine. Period. There were no steps other than ileostomy.

Jan

I wouldn't be opposed to listing Prednisone as contraindicated for use in IBD.

Here's what it did for me (and does for lots of other people): in really high doses, it'd get me to where I could function. I could go about doing what I wanted to do--I was finishing grad school at the time--on those doses. And when I'd cut back, I'd start to feel worse little by little. But I needed to be able to do what I wanted to do--others need to be able to work to keep their insurance--so we keep taking Prednisone, despite our GIs protestations and warnings about the dire consequences of it. I ended up being on it for about a year in doses ranging from 10 mg to 90 mg (30 was about average, and I took that dose for a couple months). My joints, skin, and liver have paid the price for that. Thankfully, the liver heals itself (I'm glad it wasn't my kidneys), and is getting better.

But I think it just allows people, including myself, to live in denial about the disease. And by doing so, we can put off the real choices--surgery or TNF medication--that we should be thinking about.

It's a lot to put people through for a drug that's only effective, works the way it is supposed to, in 40% of pancolitis patients.

I hear ya. I was on it at high doses for six months before seeing the light that surgery was inevitable. But, when it does work, it can induce a remission much faster than immune modulators. Is it really only 40% effective? I haven't read the stats on it recently, but I know that if it does not work, doctors move on to the next thing fairly rapidly.

I was in mostly remission over 20 years after my initial flare of pancolitis that was very serious, but steroid responsive. I was not on prednisone for more than three months at that time and didn't use it again until my final flare. I guess I was lucky.

Jan

http://www.fascrs.org/displaycommon.cfm?an=1&subarticlenbr=123

http://www.medscape.com/viewarticle/553570


61% of pan colitis patients require surgery anyway. Even at the end of the first year, 40% either are either dependent (31%), or steroids didn’t work at all for them (8%, I’m rounding up to 40). So that’s failure within a year for 40%, and failure rate of 61%--they’ll need surgery anyway—over a longer period of time.

The difference with me was that I knew I needed surgery. But I kind of figured that out when I was in the middle of something. So I stayed on Prednisone (30 mg, which slowly lost its effectiveness) knowing about the health risks. By the end, even the Prednisone wasn’t working. Two and a half months after I graduated, I had my surgery. By then, I had an iron level of 0, a blood count in the teens, I was 35 lbs underweight despite the steroids, and I couldn’t function at all. I’m convinced that it wouldn’t have been that bad if I hadn’t been on steroids because I would’ve chosen to have the surgery sooner.

This message has been edited. Last edited by: mdg,

Very interesting; thanks for the links. But the way I see it is that the outcome is more of a function of both the physician recommendation and the resistance of the patient.

We really cannot remove people's choices, particularly when one of them works very well for the majority. The problem comes in when either the doctor is not clear enough or persistent enough in getting his patient off of the steroids, particularly now that there are other drugs that are available that are steroid sparing and the steroids are supposed to just be a stop gap until the other drugs work. I definitely agree that some doctors are not forceful enough regarding the need to not rely on steroids for maintenance therapy. It is widely accepted that this is not appropriate.

Also, you cannot force people to have surgery and you cannot withhold one treatment because a patient does not choose the recommended treatment. Surgery is not without significant risk and the patient has to be allowed to choose which risks he wants to assume. If I was not allowed to use steroids for six months after diagnosis, I would have an end ileostomy today, because the j-pouch was not available then.

Jan

The one that usually ends up having to deal with all the problems steroids cause is the surgeon. My surgery was supposed to be 3 hours. It was over 9. I still don't know exactly what they did--I'm scared to even look at the reports--but I do know that things weren't pretty. My iron level, blood loss, and backwash ileitis messed things up. I've heard that they removed a small portion of my ileum too.

Fortunately, my surgeon knew what she was doing, and did a great job. Despite all the complications, they still managed to do it laparoscopically, which I find pretty amazing.

And to cap it all off, I had a severe allergic reaction to Demerol right after I woke up. Because of that, everything from the recovery room is crystal clear--even a year later.

Argh! Where is amnesia when you need it? I also have a vivid memory from the moment I was rolled into recovery. But, it wasn't a nightmare, I was on an epidural.

Put me on the list of those with complications due to prednisone. But, I can only blame myself because I was offered surgery months and months earlier. I was so sure I'd go into remission, because it worked before. I wanted to have my surgery while in remission.

Jan

I had anaphylactic (sp?) shock after the Demerol injection. I remember desperately gasping for air, and managing to get out "can't breathe." The nurses were watching everything, and when the oxygen level started to drop, they got me a antidote. I remember them telling the anesthesiologist that my oxygen count had dropped to 89 from 99.

Then I remember sitting up, they had me sitting up for some reason, and a big blurry guy (the anesthesiologist) coming over to talk to me. I kept asking him if I was going to die, and telling him that I didn't want to die because "dying after I woke up would be stupid." After he told me "You'll be ok" for the fifth time, I don't remember much...until they wheeled me up to the room.

My Dad had a list of 20 friends and relatives that he needed to call. I insisted that I call all of them. So here I am calling all of them at 1:30 in the morning. I had a really horse voice from the tube the surgeons stuck down my throat. I think that my calling them actually freaked a couple people out for two reasons: 1. I was still in the anesthesia-induced altered state of mind. 2. I sounded really bad.

Your situation sounds a lot like mine with the complications during surgery. My small intestine was accidentally sliced into (I didn't have laparoscopic surgery). I was on a heavy dose of steroids, had blood transfusions, etc. They thought the surgery would take 3-4 hours but it took 9-10 (can't remember). When I awoke I thought I wasn't going to make it. I couldn't talk because of the Morphine, but yet got NO pain relief from it. My blood pressure was increasing, my stats all going crazy, they increased the morphine and still no pain relief. Finally, my friend and husband came into the room and my friend noticed there were tears leaking out the sides of my eyes and we "made contact," and she made the post surgical team look at me in the eyes. They got it right away and switched me to Demerol, and then I had SOME pain relief. I remember a lot of it and the team asking my friend & husband if I was a previous Morphine user/addict, because they thought I had a Morphine tolerance. They laughed about that but I remember it made me mad

They removed a portion of my small intestine on purpose--it was affected by the inflammation too. They weren't expecting it to be inflamed, and it being inflamed was a big problem. But, because they removed a portion of my ileum, I'm so much better off today. It limited the inflammation, and has gotten me close to, if not completely in, remission. (It turns out I have Crohn's Disease).

Morphine worked well for me. I was on the pump for two days in the hospital. After that I took Loritab for 10 days. No pain medication, even Tylenol, since.

Prednisone is what I have always referred to as one of those 'necessary evils'. I think Jan said it best when she referred to the doctor and patient knowing 'when to say when'. I have had UC for 18 years and prednisone has been very effective for me (a life-saver at times!), preventing me from needing to go the immunomodulator route (or surgery). This is especially important given I am a woman in her childbearing years and prednisone is considered safer than the immunomodulators for pregnancy. Yes, I have suffered the pred side effects through the years (goodbye size 4 clothing, hello size 14!, as well as many others non-cosmetic issues with a recent adrenal insufficiency episode that was quite horrible). However I would take those any day over the alternatives presented to me.

I think like anything with IBD and treatment, it is individual and must be well thought out and discussed between doctor and patient. Knowing when to say when to steroids is key. My husband became steroid-refractory, tried all the other stuff, then went to surgery. The long steroid use had negative effects for him on his surgery and healing so we probably should have said 'when' a little sooner. But it is hard to face that reality of surgery. However I don't think the prednisone can be blamed; the choice to continue on was my husband's. Perhaps his doc should have 'pushed' him sooner; who knows. But we all know if patients aren't ready to have surgery they aren't going to do it. It is such a hard time being so, so sick and then having to make such a life-altering decision. How can one necessarily do what is 'logical'? Hindsight is 20/20 but in the middle of it we do what seems to make sense or what we feel like we can live with, physically and emotionally. Sometimes a little pill like prednisone is all we can deal with, and the fact that it does work for so many, at least for a while, makes it a viable option to a point. The key is knowing when to throw in the towel, which is easier said than done.