Update: On my daughter Holly.

Hi Tom hope you can get in soon to see the Dr. to talk over her care. I am glad that she does not need surgery at this time. Remicade is a big step that's for sure. It is a immune supressant and if you goggle it there is alot of info on it. It is a biologic and I was on it for 6 months and is supposed to be good for healing fistula's. lol gail

Thanks guys,

I did google Remicade briefly as "Gail" suggested. WOW!! is that alot to digest. This seems to be a serious and potentially dangerous drug. It seems difficult to understand just how likely some of the serious side effects are to present themselves. Particularly the Lymphoma and death part. 

I hope to hear from more Remicade users. I would like to know if this is a drug that can be used for a short term, then discontinued. I seem to remember something about antibodies being built up against the drug preventing going on and off the drug.

Tom. 

Hi Tom,
I have vaguely been following your daughters progress but haven't posted, the others here are amazingly knowledgeable and pretty much seem to cover it!!

I am an infliximab/remicade user and I am an episodic user. Here in the UK when they first got the budget for infliximab as it was so expensive they'd only give you one dose and then you'd get the next when your symptoms returned, for me it was 2 years before I had the second and that gave me another 3 years symptom free.
Now infliximab is widely available in the UK and the majority of patients have switched to having it regularly and those who start it now are regular users. There is a lot of evidence that says regular treatments are better than episodic use, its something like 50% more likely to stay healthy over X amount of time in comparison if you having it regularly and less chance of building up antibodies and reactions etc. So there is a very strong argument for having treatment regularly.

I however am very wary of infliximab, if one dose was enough to take me from literally moments away from an ostomy to two years without symptoms then that is one incredibly powerful drug. And what could the benefits have possibly been of having it every 8 weeks during those two years? And the next 3? In total if I had been a regular user that would have been 30+ infusions when in actual fact for me 2 doses is all it took. As a 22 year old female who is also on methotrexate I worry about toxifying my body too much and so have always used infliximab as my 'emergency treatment' when a flare strikes and this has been very successful for me. After my last flare (a tricky one, but is another story lol) my GI suggested maybe a course of infliximab and then after remission had been achieved for a while to come off it, from what I've read (I'll have to look up links for you as don't have them saved on my laptop but I did extensive research into infliximab a couple of months ago when I was considering switching to regular infusions, its bulky information just to warn you!) is you can have a course, stop when remission is achieved and you can go back on it again but after an antibodies test to make sure that in that period of time off it you haven't built up antibodies to it.

Episodic use is not standard treatment like it was a few years back, it works for me and some others out there but carries more risks and regular treatment is more likely to be successdul, I just happen to be in the smaller percentages where episodic use has been successful, I just thought I'd tell you my experience but remember with Crohn's each case if very different. But basically you don't HAVE to have it regularly, and you may be able to stop and re-start, its tough because obviously there's the role of antibodies etc, its a really tough decision to make using infliximab, so arm yourself with as much information and research as possible and really talk out all options with your GI. I really hope that whatever happens your daughter manages to get this under control and enjoys many years of remission.

Tom,
It helps to know that Remicade was first used specifically to treat those with fistulizing and/or severe CD. Remicade has been shown to be very effective at healing fistulae. As the use of Remicade became more widespread and further studies were done, the approach to deciding whom to use the medication on was changed. There are still two schools of thought in treating CD, the top-down and step-up approaches. Let me say first, that those adults diagnosed with severe and/or fistulizing CD are almost always treated agressively from the outset after diagnosis. I am not as familiar with pediactric usage so my comments pertain to adult treatments. Given the age of your daughter at diagnosis and that she is older now may mean that they are looking at treating her more like the adult patient.

I am not going to outline the step-up and top-down strategies. There's lots of info about it and you seem to be a verocious reader/researcher. Start here for a good overview: http://www.medscape.com/viewarticle/560005_1

I was diagnosed with mild CD of the terminal ileum. Did the usual - Entocort and steroids for the initial flare. Then the arthritis kicked in, debilitating arthritis that had me using a walker. Found out I had spondyloarthropathy that was severely flaring and the GI and rheumy said Remicade. I jumped at it because I was to the point of even needing assistance on and off the toilet. After the 3rd infusion, I stored the walker in the closet and was back to relatively complete mobility. The side benefit was my guts were unbelievably NORMAL. I went from diarrhea 10-20 times a day and severe dietary restrictions, to formed stools 1-2 times a day. For the first time in 25 years [!!!!] I could eat raw fruits and vegetables [except for my nemisis Romaine lettuce].

My last colonoscopy showed only scarring in my ileum from the healed erosins/ulcerations. At that point I had been off Remicade for 9 months. I took Remicade for 2 years, 9 months. I eventually had to stop because it was no longer effective at dealing with my ankylosing spondylitis. I went to Humira and took that for 2.5 months.

Remicade gave me my life back. But in fairness, and because I have written about it here and you could certainly find it searching this forum, I am one of those people that not only developed lupus antibodies and lupus-like symptoms while on Remicade and Humira, I now have been diagnosed with lupus oputright. My GI feels I developed it from the Remicade. My rheumy thinks I had it underlying previously and was going to likely convert at some point. So who knows.

The biologics, especially Remicade, have grown in usage over the years. Therefore, more and more "issues" have come to light with them. As I have always advised, one must weigh the pros and cons in terms of ones medical conditions, previous treatments and responses and quality of life when deciding to take a biologic. I have thought long and hard about what I would have done knowing the conditions I now have back when told that Remicade was an option. I still would have taken Remicade. My quality of life sucked. My mobility was practically nil and I needed care in all aspects of my life.

Sorry for this rambling post...the best to your daughter and you! ~~ Ides

Hello Keenca!

Just wanted to welcome you to the Forum.  What a great place this is!  I'm glad your son is doing so well and pray his good health will continue! 

Has she tried taking large doses of fish oil?

Hi Tom,

Yes, lupus is the reason I discontinued the remicade.  Hopefully your daughter will be fine on remicade and feel wonderful without any of these nasty side effects.  I have been on humira since April 2008, so far so good.  Remicade works wonders for fistulizing crohn's, I have heard from many people that it gave them their life back.   Ask about the MTX along with the remicade.  It is a scary decision to make, but I do think it would prevent further damage to her bowel, and if she developes lupus - prednisone and MTX are what takes care of that.

Julia

 

Hi Tom,
Wow what a ball they have thrown at you now.

I am not sure about the Lupus and remicade but I have recently discovered that if you have one auto immune disease yours chances of developing another are greater. I don't know the numbers.
I am being tested for Rheumatoid arthritis and Lupus right now and I have never been on Remicade. From what I have read is that Remicade and Humira (very similar drugs) are used to treat more severe cases of RA and Lupus, so I don't understand how they cause it. These drugs are just so confusing..............

I am wondering why they suddenly want to switch to Remicade for you daughter. Has she started the Imuran yet? Maybe they just want to be more agressive from the get go instead of waiting. Plus I believe the remicade works quite a bit faster than the Imuran which can take months to work.

Tanya

Tom said...I'm so surprised that you as well have developed Lupus. This is the last thing my daughter needs is this to deal with. You seemed to stop the Remicade because another condition, not that it stopped working for you, is this correct? You also present a concern I have, that, what happens when you've been on all of the current (drug) treatments, and they've stopped working for you. How are you treating the disease now? 

Tom,

Remicade was initially approved for use in treating rheumatoid arthritis. Therefore studies as to Remicade's effects/problems were first brought to light from trials on RA patients. Since then other groups of patients have also been studied.

http://www.hopkins-arthritis.org/arthritis-news/2001/infliximab_dna.html

http://www.ncbi.nlm.nih.gov/pubmed/16239844?dopt=Abstract

Many people receiving Remicade develop anti-dsDNA antibodies which are found in patients with lupus. The vast majority of the patients never experience any lupus related symptoms and these antibodies were generally only found during trials. In almost every case, those that did experience lupus like symptoms had those symptoms resolve once they stopped Remicade. The anti-dsDNA antibodies could not be detected 3-6 months after stopping the medication. In the thousands of patients worldwide treated with Remicade only a handful have been reported to develop lupus outright following Remicade treatments. That said, I do find it curious that three [4?] of us are members of this forum.

I stopped Remicade because I began dreading getting infusions because I felt worse following them. In hindsight, what was thought to be a worsening of my AS, was actually lupus flare-ups from the infusions.

As I said before my CD is a mild case. When I went on Remicade, I was started on Imuran at the same time. My guts have remained in remission since about my 5-6 infusion of Remicade. It is felt that Imuran is keeping my CD under control at this time. I am most fortunate. My AS however is a continuing battle that is treated with steroid injections, the Imuran and periodic usage of prednisone.

In regards to Imuran - I have a 74 year old friend that has had severe small bowel CD for 50+ years. Her major problem was frequent, severe bleeds from the small bowel requiring transfusions. She lost count of the transfusions. When I worked with her over the course of 7 years, she was hospitalized on average every 3-4 months for treatment of these bleeds. She started on Imuran 10 years ago. Six months after starting Imuran, she noticed a marked change in her CD related problems. She has not had one hospitalization or small bowel bleed since then. For some, Imuran really works!

~~Ides

What kind of fish oil and what dosage does he recommend?

I don't know what dosage he put his other patient on, but I saw him a few days ago and he put me on 15 fish oil capsules a day (5 tablets three times a day).

Hi Keenca,

I've read about the differences with Humira and Remicade make-up. Like LDN, I'm not sure if Humira is available in Canada. Would you happen to know how they compare in terms of effectiveness? Is one considered better than the other?

I've never heard of taking an anti-viral drug if exposed to the Chicken pox virus. I'm still extremely worried about this aspect. Contracting Chicken Pox while immune compromised can even be deadly. But as you said, we likely don't have choice either, and just have to hope it doesn't happen. 

I had kind of written off fish oil, but I will certainly get some. I can't wait to tell my daughter I have more pills for her.

Tom.