Is there a page or website that reviews ALL the drugs risks/benefits in one page?

[chefmommaof6]

I was just wondering if there was a good website/webpage/book to read that goes over ALL the drug treatments for Crohn's as well as risks/benefits to each, esp. with kids/when they tend to work/when they don't. Maybe this is a pipe dream, but I have been researching and there is so much mixed info, I just need something that could help me begin to wrap my head around them a little better. Thanks in advance.

 

[Clash]

Hmmm...I'm not sure about that. A member did just recently post a website that listed the risks of meds but I'm not sure of the thread title. I'll see if I can pull it up. It was for all drugs though so not sure it would be that helpful. I just remember the biologics being in the top 10 for the last ten years or something.

 

[Tesscorm]

There are lots of books written about crohns and most will include information on the common drugs but I've never seen one that includes those that are used 'off label' or outside of their usual purpose.

The common drugs would include all those shown in the Treatment section of the forum. Enteral nutrition is not a drug but is a common treatment. Low dose naltrexone (LDN) is 'off label' so unlikely to be discussed in many books as a treatment option. There's also Tsyberi (sp??) and Stelara - I know virtually nothing about these but they are newer options, are perhaps also 'off label'???, and may not be approved everywhere for crohns/uc.

While not all on one 'list', the forum's Wiki also gives lots of info re each of the drugs. As well, each of the Treatment subforums has a 'sticky' (the top thread) that gives an overview of the treatment.

Hope that helps a bit

 

[Patricia56]

Not that I know of.

You can look at the CCFA website, it has a lot of information but it'snot necessarily geared toward children.

Unfortunately, a lot of IBD treatment is essentially trial and error. While the results of using a given med can be generally predicted the degree of response is much less predictable and the side effect profiles are the same way.

New meds are coming out, combinations of meds change, new data on risks and benefits are also coming out all the time.

Um, does that answer your question?

 

[kiny]

I would use independent doctor accounts or the FDA page, most sites talking about risks are totally off, nor are they updated. I don't live in the US so I'm not that familiar with the FDA, but it is the next best thing I have found after reading doctor accounts. Doctor accounts are pretty much the best way to get the info.

By doctors account I mean personal accounts of doctors writing down events in their patients, I have posted many of them in the multimedia section. Most GI talking to sites or conducting interviews are just big pharma reps, you can not trust them.

This is an example of a doctor account: http://www.crohnsforum.com/showthread.php?t=44012 They will show risks that are often undocumented, even sometimes by the FDA.

I have posted many threads like that.

 

[Patricia56]

I think it is very difficult to speak about risk in this way because risk is relative. It is not absolute.

What is high risk for one person (Pentasa because they have an allergy to aspirin) is low risk for another with no allergy.

But this example is flawed because it fails to take into account risk over time. And that is the part of risk that is very difficult for anyone to accurately assess until many people have used a medication over a long period of time and there has been excellent reporting of results, side effects and adverse reactions. Unless it's a really dangerous med with lots of adverse reactions and previously undocumented serious side effects.

Even then the risks are statistical and are only as valid as the group the statistics are based on. So if it's adults and you're a kid - well who knows how well those statistics apply to you.

An analysis of one of the very large longer studies of Remicade concluded that your risk of death was highest when you were on steroids, not remicade.

That's a simplified version of their results but I think taken altogether these examples demonstrate that these are not simple questions and there are no simple answers.

Finally, talking about the level of risk of medications fails to take into account the risk inherent in failing to treat the disorder itself.

As a parent who has lived with making these decisions for 7 years the bottom line is that you must choose between what you know to be true in the moment and what might be true in the future. Every family must find a way to balance those two things in a way that they can live with. And every one of us hopes that the day comes when we and our children no longer have to weigh the possibility of future disaster against the current reality of a child with severe disease who has no quality of life and whose life is in danger without aggressive treatment.

 

[kiny]

An analysis of one of the very large longer studies of Remicade concluded that your risk of death was highest when you were on steroids, not remicade.

Sorry but that's complete bs.

Here are the rates, remicade (infliximab) was number two from 1998 to 2005, only overdoses of painkillers managed to cause more deaths. And steroids are way more used than remicade.

I would be really careful about reading studies from CCFA or studies that have conflicts of inflict.

 

[Patricia56]

kiny -

my purpose was not to get into a battle of references. I deeply respect your knowledge and skill in ferreting out this kind of information.

my point was rather that each individual and each family must individually assess their situation, the short and long term risks and benefits and make the best choice they can make.

acknowledging these complexities when posting a list of medications in a way that labels than as high to low risk seemed important to me.

As for the steroid comment, I will spend some time and find the exact reference and post it for you since you felt so strongly about it that you needed to be insulting.

 

[kiny]

Sorry.

I just think studies are not very accurate, people need to have the right numbers, those can usually be found from FDA or individual doctor accounts. Studies regarding drugs safety on infliximab have always had very high conflict of interest because the only ones willing to pay for those studies have been the makers of the exact drugs they are testing.

All I hope is that no one takes the "safety of infliximab in 2000 patients over 2 years, sponsored by Jannsens" serious.

They might look like studies, but they're not studies, they're pamflets. They happen by doctors, they happen in hospitals, but they are not neutral.

It were individual doctors account who said to stop using combo therapy when possible, not studies. Studies said it was find and dandy, individual doctor accounts were titled "Is this what we're doing" after they lost patients.

Tysabri, same thing, studies said it was fine. Individual doctors said it was not fine and pulled on the alarm bell and told the FDA to remove it from the market.

It's these doctor accounts:

http://www.ncbi.nlm.nih.gov/pubmed?term=mixed%20fortunes%20crohn

titled "mixed fortunes" because they lost patients

Almost every study will say a drug is safe. Until a few months later the individual doctor accounts suddenly appear everywhere where they're losing patients. The FDA keeps records of those numbers and I think the picture of the FDA is fairly accurate, at least it's much better than studies sponsored by big pharma which show a completely one-sided picture, the FDA does a much better job.

I removed any ranking since I do not think it is a good idea, although I think people should make rankings.

 

[Patricia56]

This is actually a more recent study than I was referring to. I've quoted the abstract's conclusions and excerpted a paragraph from the Mortality section of the article.

http://www.ncbi.nlm.nih.gov/pubmed/22890223

Serious infection and mortality in patients with Crohn's disease: more than 5 years of follow-up in the TREAT™ registry.

Am J Gastroenterol. 2012 September; 107(9): 1409–1422.
Published online 2012 August 14. doi: 10.1038/ajg.2012.218

Conclusions:

Mortality was similar between infliximab- and other-treatments-only-treated CD patients. An increased risk of serious infection with infliximab was observed, although CD severity and use of prednisone or narcotic analgesics carried higher risks.

"Adjusted results of a multivariate regression analysis (Table 5) indicated that age was a significant predictor of death (HR=1.08, 95% CI=1.07, 1.09; P<0.001). Protective effects were observed among females (HR=0.71, 95% CI=0.53, 0.96; P=0.023), Caucasians (HR=0.64, 95% CI=0.39, 1.03, P=0.064), and patients with disease in only the ileum vs. those with disease in both the ileum and colon (HR=0.53, 95% CI=0.36, 0.77; P=0.001). In investigating medication use among patients who died relative to those who did not, neither infliximab (HR=0.83, 95% CI=0.60, 1.15; P=0.262) nor immunomodulator (HR=0.86, 95% CI=0.62, 1.18; P=0.338) treatment was a significant predictor of death. However, treatment with prednisone (HR=2.14, 95% CI=1.55, 2.95; P<0.001) or narcotic analgesics (HR=1.79, 95% CI=1.29, 2.48; P<0.001) significantly predicted death (Table 5)."

 

[kiny]

Yeah,

but at the bottom it says:

"We thank Mark Molenda (Janssen Biotech, Inc.) for analytical support, and Michelle Perate, MS, and Mary Whitman, PhD (Janssen Services, LLC) for writing and editorial support."

So the pharma company, Janssens Biotech, maker of infliximab, is doing the analysis and editing regarding the safety of infliximab.

I just can't read these studies with good faith, it's an obvious conflict of interest which negates anything this study is saying, at least for me it does.


Funding is from Janssen too:

"Funding for the TREAT registry is provided by Janssen Biotech Inc., a Johnson and Johnson (J&J) pharmaceutical company."


And look over the conflicts of interests of those doctors, can you really take these people serious anymore, some are working for no less than 10 companies, are they really doctors at that point.

 

[Patricia56]

I understand where you are coming from about accepting the validity of study results when the studies are underwritten by drug companies.

Been in about 3 of those studies.

Sadly, I don't think there's much alternative but to take that information at face value at first. As I said before it's only after a longer period of time that more information that is likely to be statistically sound and relatively unbiased becomes available.

And I think it is a potential fallacy to assume that in some perfect world of drug trials done in a perfect way and funded by altruistic sponsors that we would never have severe adverse events, cancer clusters showing up years/decades after a drug goes into use, inaccurate reporting, etc.

So we have to make the best of what we do have.

And thanks for the apology.

 

[kiny]

Hopefully change comes and safer medication becomes more widespread, I hate seeing threads pop up where people are worrying more about their medication than their disease because some carry risks. Been going on for way too long.

Yw, I am pretty rude without meaning anything by it sometimes, until someone points it out to me.

 

[Patricia56]

Totally with you there.

 

[DustyKat]

You will likely find many a page similar to this one that gives a decent overview of the treatment of Crohn's, including medication and it's side effects.

There are also books available and this one that David started the thread about is an excellent one.

As to what works...unfortunately this disease is highly individual in both its presentation and its treatment so there will be no hard and fast information there.

Dusty. xxx