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.
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!
Thank-You all, for the excellent and DETAILED replies!! I address each here rather than multiple posts.
I'm glad to see that your husband is doing well on Remicade. It's very reassuring to hear success stories. You describe the fight against this disease very well when you call it "Russian Roulette". I do worry that I won't make the best decisions as you point out.
I'm glad to hear that episodic use has worked for you. I don't think that our GI would encourage that. I will definitely do as much research as possible, and Thank-You for your best wishes to my daughter. I too hope that she can tame this disease and have the kind of life she deserves. I hope I will be able to make the best possible decisions for her without reget.
I've only had a couple of days to do any real research about Remicade. I've haven't come across any discussion about the "remicade induced lupus" that you contracted. That certainly adds another component to things. You seem to imply that it was a temporary condition, and is this why you stopped the Remicade?
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?
I can really relate to what you've been through with your son. I'm wondering why you went with Humira instead of Remicade? I'm online with what your GI is saying, that treating the disease aggressively is the way to go. I really hope your son continues to have success and many years of remission.
My daughter hasn't had the Chicken Pox, or the vaccine. We didn't even know that it was such a big deal until we read the Imuran pamphlet. Our GI told us that she is the first Crohns patient they've had that didn't have the Chicken Pox. We can't get the vaccine now, because she's been on Prednisone, and as long as she continues on Immunosuppressants she won't be able to get it. If she does contract the Chicken Pox, it will be a very serious problem. Our GI simply states that she will have to take the chance, as the risk is outweighed by the benefit for the disease.
Thanks again to all of you. I could really have gone on, but I know I'm getting long here.
No never have tried fish oil. Why do you ask? I seem to recall reading recently that studies have shown that fish oil hasn't shown any benefit for Crohn's.
Hi again Julia,
I'm still abit confused about the Lupus. I haven't been able to find any info. on this as a consequence of Remicade. Do you know if this is common? You say that it was temporary for you. Could you explain that abit further?
I just couldn't imagine getting a treatment for Crohn's and ending up with another serious disease. I'm very concerned about this.
Thanks very much for explaining everything so thoroughly. I hope the liklihood of developing Lupus is extremely small.
I'm surprised that you consider yourself "Mild". (That's encouraging). I just wouldn't think of someone with mild Crohn's being on such sophisticated meds.
It's encouraging to hear of success stories with Imuran. I'm still not sure which med. we'll get.
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.
I will certainly give the Fish oil a try. I guess it's too early to tell if it's helping you.