REMICADE ( DO YOU HAVE LUPUS)

Hi, and welcome to HW. Has your mother's GI tested her for antibodies? When they suspected lupus for my husband, they tested him for lupus (with the ANA test), and drug induced lupus (with the anti-ds-dna) test. Both of those for him were negative, and they went on and tested for RA (with the rheumatoid factor test, and the anti-ccp test). Also, there is a prometheus labs test to see if she has developed antibodies to remicade itself.

I think your mother should be tested for lupus, and treated to get the pain down to manageable levels (maybe a course of steroids), and definitely before the next infusion.

If she tested positive for lupus (with the ANA test), and is negative for drug induced lupus, then, she should probably not be on anti-tnf therapy. If she tests positive for drug induced lupus, she needs to not get any more remicade, and once she feels better again, try some other anti-tnf agent like Humira or Cimzia. If both of those are negative, and she tests positive for antibodies to remicade, then, she can probably move on to another anti-tnf agent like Humira or Cimzia.

In any case, this warrants further testing, and maybe a visit to a rheumatologist is in order. If evidence points to drug induced lupus, then, it is very likely that the symptoms will go away as remicade leaves the system. In the meantime, to deal with the pain, a course of steroids maybe in order.

Take care, and I hope your mom finds answers and relief soon.

PV

I was dx'd with Remicade induced Lupus. I am now on Humira, along with Plaquenel for the Lupus symptoms. You can get Humira induced Lupus too. Just wanted to let you know this.

Kimilio,
Just my opinion but if he is doing, feeling well I would stay away from remicade, many people have success with different diets, probiotics, etc. Different things work for different people, READ READ READ. Also make sure you read everything you can about Remicade, especially the side effects and increased cancer risk, If I recall correctly the type of Lymphoma caused by Remicade is untreatable and much much more likely to occur in young males who have also taken 6mp, as a matter of fact all of the cases may have been young males who also took the 6mp. My Dr. keeps pushing Remicade saying the cancer risk is only like 12 in 100,000. But I beleive that the odds of Crohns are like 7-10 in 100,000 and I got that. These numbers are off the top of my head and could be slightly wrong so look up the info yourself, but I know in my case my GI is not willing to help me with anything other than meds, he doesn't want to discuss diet, allergies, probiotics, hormones or anything, just take meds is his advice. He says "food does not cause crohn's" well duh, but it surely does aggrivate it!!!! Trust yourself as a mom and of course do whatever treatment "you" feel is necessary, many Dr.'s only prescribe meds, I would definately go with the chiropractor and see if he can help. For me Remicade will be the last resort, if it is a choice between being sick all of the time or being able to function.

Best of luck to you and your son

Wow, what are the ages of your kids? I get nervous everytime one of my boys (ages 2, 12 and 16) says their stomach hurts or they have D. My 16 year old son has digestive issues more than is normal but I have been reluctant to get him tested for anything because I do not want to make it impossible for him to get insurance later on, and he now really has his heart set on joining the military as soon as he is out of school and I know they won't take him with that diagnosis. He does not have pain and has never been sick but we have a strong family history starting with my generation, out of 5 siblings 4 of us have IBD, one UC and 3 crohns, my brother was diagnosed at 17(now27), my sister with UC at 19(now35), my sister with crohns at 20 (now 21) and I was sooooo lucky to make it to 30(now 33). My GI said that though you are more likely to get it if a sibling has it it is extremely rare for that many in one family to get it. I get sick and become obsessed with finding information then I feel better and let off, I have never done the elimination diet because I have no self control, however there are a few foods for me that I know cause problems, but others don't have problems with those foods, everyone is different. I recently discovered that sugar is really bad for me (I have read this many times over the past couple years but was determined it was not an issue) like I said I have no self control so I have not eliminated sugar but I have cut way back and do feel much better. Somewhere on here is a list of all the different medications and I think about supplements and probiotics, but I do not remember where to find it, you could try the search or wait a bit and someone may post it for you. There is a lot of helpful info on here, some of the stuff can be scary just remember everyone is different and some people get sicker than others, noone in my family has had to have surgeries and none of us have gone to any of the extreme drugs, we do fairly well on diet, though we are all different in what we can eat, all of us have found we have problems with processed foods and lots of additives. Many people have success with probiotics but they don't seem to do a thing for me personally, I have read several good books that really explain the connection between food and inflamitory diseases, unfortunately I do not keep a list and cannot remember the names, One that I liked was why doesn't my Dr know this, By David Dahlman??? The book is good but if you take everything he recommends you are looking at $300 a month in supplements, however he is not just pushing his own products he also tells you other places you can find the same things. Check out your library, you could spend hundreds of dollars on books and get nowhere, It can all be very frustrating and confusing but hang in there, someday someone will figure this out, and it probably won't be a Dr.

Kimilio said...
youngest diagnosed at 7, now 10. Oldest diagnosed at 18, now 19. How do u treat with diet control if no symptoms exist to gauge whether it is working or not? What is out there to address fistulas, other than Remicade?

You really can't unfortunately.  I doubt your GI will order MRI's to check on the effectiveness of a chiropractors special diet. 

You're in a tough spot.  The only thing I would add is that if inflammation is going on, over time it can cause strictures even if there are no symptoms.  Can you get a second opinion?

Some here have had success with enteral nutrition with children.

I am hoping to find a GP that specializes in alternative medicine, I have found one in my area but she didn't take my previous insurance, I am switching insurance companies as of the first and she takes that one. My GI won't check my ESR or CRP, he says he just goes by "how I feel". My old GI used both of these tests to help determine if the meds were working or not. I am hoping that this GP is one who will be willing to run the tests along with vitamin and hormone levels. I have been reading alot about Vitamin D and other deficiencies with crohns, I don't know why it is so hard to get Dr's to do this stuff, if nothing else to eliminate the possibilty of some of these things being issues. I have not had treatments for fistulas but think I have read that cipro is approved for long term use for fistulizing crohns, then of course you have the issue of anti biotics, but I would personally probably prefer that to remi if it were me.
I don't understand why insurance won't cover enteral nutrition, according to my GI it has been proven to be as effective in healing as prednisone?