Worried about Remicade, but know I HAVE to take it.

I've been doing more Crohns research lately, and came across a article about Remicade...

I have found that Remicade was initially approved in 1998 to treat Crohn’s disease in adults. And they knew as early as 1998 about the cancer risks, yet Remicade (infliximab) was approved to treat children with active Crohn’s disease on May 19th 2006. What?

Furthermore, evidence published in May 2006 in the Journal of the American Medical Association, suggests that Remicade can TRIPLE the risk of skin cancer . While previous studies indicated the increased risk of infection and lymphoma, a blood cancer, this is the first study to show that Remicade can cause skin cancer. Remicade treatment has been previously linked to serious side effects, including fatal reactions such as heart failure and infections including tuberculosis, histoplasmosis, listeriosis, and pneumocystosis. The FDA issued a series of warnings and now requires the drug to carry a special “black box warning” on its label, a heightened warning for potentially dangerous drugs.

This was one part of the article...This is very scary...Triple the risk of skin cancer...Not good.

What do you think?

i had about 7 doses and then had to stop...my antibody test showed no remicade in my system but my antibody level was over 8- it should be negative. i did not have any negative reactions to the drug- long term who knows...hope it works for you!

Well i can say i have done 2 doses and so far it seems to be doing its thing. To me the side effects are the least of my worries. I now can go to the washroom with little or no pain. (Mine you i am still having bm problems with the ocasonal bloody pop) I can eat a bit more now without feeling too sick afterwards. Its good to read up on all the side effects but don't read too much into them. I did and all it does is stress you out. The nurses at the infusion clinic treat you wonderfully and keep a close eye on you.

The risks are worth getting rid of the pain. ( at least to me.)

The only major complaint i have about it all is the headaches i seem to get the day after, but i am not sure if it is from the remicade or other things going on at the same time.

It's worth a try.

Good luck

I've been on Remicade since 2004 first year I was diagnosed. There was a huge difference in my life that first year. My only complaint w/ it was I had flu like symptoms for at least 3 days after each infusion (low grade fevers, migraines and nausea). And I got upper respiratory infections quite frequently. The following year my GI added Imuran and after about three months the side effects wore off and I started noticing my CD really seemed to be under control and my fistula quit opening up that year also. This past year I persuaded my GI to move my treatments up from every 8wks to every 6wks. Waiting those last two weeks for treatment was miserable ugh. So now I don't count down the days until treatment, cuz it's here on time. Also now it's only treatment day that I have the flu like symptoms and the day after I'm just a bit slow and tired, the URI have greatly slowed also.
For me Remicade was worth all the possible bad stuff, I hope it is for you too.

listen, some people have really bad allergic reactions, some it gives them they're life back, roll the dice, I did. it has helped me quite a bit, my only neg. reation is pretty achey back,  which requires scrip to advil 500mg and vicodin which I take anyway for gut pain. But pain free NO, but close. It also keeps my flares down, so those really bad crampy blockages we get, those are at minmum. so I'll take achey back over those horrendous gas blockages. good luck.

The chances of getting cancer are already one in four. Why increase your risk and worry by suppressing your immune system without first seeing if some simple lifestyle changes could help? You could cut out gluten from your diet and see if anything improves. Then the same for dairy and high fructose corn syrup. Those are the usual suspects.

For me it was plums, shellfish, and kale (but I am now trying to see if this applies to other cruciferous vegetables as well). If nothing works then perhaps it is probably worth it to use those big guns like Remicade to get your IBD under control.

If you're worried about skin cancer, then you're probably not sick enough for remicade.
Most of us get to the point where we are so sick that we don't care about such things.
Why worry about a year from now when you just want to get through the day?
Besides, skin cancer is fixeable. Before I got my first infusion, I was more worried about the Lupus it could cause because I've watched my grandma suffer with it for years and there is no end in sight to her pain.

Bluemoon7 -

I think that whatever article you were looking at (you didn't post a link or say the name so I can't comment on that article specifically) does not accurately represent what we know NOW in 2011 about these risks. The following information is a summary of info that can be found at www.ibdwg.org. This is a website for physicians treating patients with IBD by the IBD Working Group. The IBD Working Group is a group of top researchers from around the world although most are from North America.

To summarize:

From 1998 - 2006 world wide 843,000+ patients (all patients including those with RA for example) are known to have received biologic infusions.
This is 2,565,567 patient years of data.

In the US 137,000+ adult IBD patients had received biologic treatment
13,500+ pediatric patients
27,000+ young adults (18 - 30)

The TREAT registry was created to prospectively track risks associated with use of biologics in IBD. It includes patients who are and are not receiving biologics.
Based on results of 20,000+ infusions the rate of serious infections is 4.6% which overall is 2% higher than in the placebo group groups.
The highest rates of infections were pneumonia (1.2%) and abscess (1%)

The TREAT registry has (to date) identified 3 factors associated with increased risk of infection. In order of increased risk these are:
Concommitant use of Steroids
Concommitant use of Narcotics
Severe CD

However, in 20,000 patient years of follow up there has been no statistically significant increase in mortality due to serious infections.

Per 100 patient years there is no statistically significant increased risk in mortality when you compare IBDers who are and are not on biologics.
There is a statistically significant increased risk in mortality associated with steroids and narcotic use.
There is NO increased risk associated with length of Remicade treatment.
There is no evidence that Remicade reactivates latent viruses.

The TREAT reigstry has found NO statistically significant increase in cancer so far in patients taking biologics.

A meta-analysis of large clinical trials found that the only statistically increased risk of death in IBD patients taking biologics is associated with the use of ..................
STEROIDS

There is uncertainty and insufficient data about the degree of increased risk of a specific, extremely rare cancer in young men on Remicade. This cancer, HSTCL (a cancer that was only identified in 1990 and has had barely more than 100 cases diagnosed worldwide) is a virulent, hard to diagnose cancer. The "sense" as the IBD researchers put it, is that there is "something" going on here given how rare this form of cancer is. However, there is too little data available to figure out what is really going on and whether there is in fact an increased risk due to peds IBD, biologics or some other factor like what they eat or where they live or ???

These risks must be viewed in the context of the risks associated with untreated IBD and IBD treated at a less than optimal level.

These risks are very difficult to quantify because most patients whose IBD has been diagnosed are in fact receiving some level of treatment and whether that treatment is optimal is anybody's guess in a given case at a given point in time.

What can be said is that, in research published before the advent of biologics - that is published through 1989  - estimates of the rate of mortality among CD patients was twice that of the general population. More recent estimates have placed the risk of mortality to be around 1.4 that of the general population. 

At this time, researchers have found NO increased risk of death among IBD patients who are using biologics. This would appear (please note I said "appear") to suggest that, in fact, biologics have REDUCED the risk of death among IBD patients who are using biologics.

It is true that we do not know the truly long term (20+ years) effects of the use of biologics for various lengths of time in various disease presentations. But the evidence so far does not suggest that there is any hugely increased risk of cancer, mortality or infection.

I personally am nervous about whether there will be long term effects among pediatric patients. We won't know that for a very long time and in the meanwhile we parents are faced with very hard choices.

I hope this information is helpful to you.


Patricia

Thanks everyone for all the ideas and comments...So very helpful.. So to answer some of the questions....I tried to put the link to the article, but couldn't seem to get it to work...

I feel like I have to take Remicade because I had my first resection in 3/06 and was put on everything offered except Remicade....Nothing seemed to work, never got into Remission. I held back from Remicade for several reasons. I'm uninsured so that makes all the difference. I knew I couldn't afford it. But after having to have a 2nd Resection in Oct of 2010, I'm well aware that if I don't do something like Remicade that I will be right back in the Hospital getting my 3rd Resection..

So I've been approved to get Remicade from the Manufacturer and now have taken my first few doses. I am proud to say I feel great right now...The best I've felt in years....I finally feel I know what Remission is...I'm just so greatful for Remicade. I do feel bad a day or two after my infusion, but other than that I'm good.