REMICADE ( DO YOU HAVE LUPUS)

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allikat
New Member


Date Joined Dec 2009
Total Posts : 2
   Posted 12/30/2009 1:47 PM (GMT -7)   
 
 
My mother has been given Remicade 5 times over the last six months, at first she was doing very well, no Chrons symptoms. However about 5 weeks ago she woke up with a very stiff leg, then her arms started to hurt and swell. Basically over the last 6 weeks it has gotten so bad she can barely walk, her arms hurt to raise them up, hurt hands cannot tighten to make a fist. She is 57 and became 95 over night. Her Chrons still is fine its her body that is almost breaking down infront of me.
 
She is scheduled for another infusion Jan 11 2010, but she will not be getting another one due to the pain she is now suffering with.
 
 
Does anyone know if this will go away?? Or has anyone else experienced this and what did you do to fix it?

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 12/30/2009 3:02 PM (GMT -7)   
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
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


allikat
New Member


Date Joined Dec 2009
Total Posts : 2
   Posted 12/30/2009 3:14 PM (GMT -7)   
I am so very greatful for your message. I will send this over to my Mom and have her get the tests run ASAP.

Thank you

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 12/31/2009 3:27 AM (GMT -7)   
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.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Kimilio
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/31/2009 8:54 AM (GMT -7)   
WOW! This is all so overwhelming.  I have a 10 year old son diagnosed with crohns in summer of 07. Had no typical symptoms. Discovered fistula. Has been on 6mp, switched to methotrexate and treated with entocort for ileum inflamation.  Still not displaying any symptoms.  However, routine blood work and clinical testing (ie. MRI's, colonoscopy, barium xrays) indicate inflamation.  Doctor wanting to go with Remicade do to advanced stage and history of fistulas.  This terrifies me.  Have friends with crohns that have had horrible experiences with remicade.  One has suggested trying diet control.  He is a chiropractor and claims to have had success with it.  All reports I am hearing is that it controls syptoms for some sufferers, but as I mentioned he does not experience pain or diarrhea, etc. At his young age I am hesitant to jump to Remicade.  Any input from others that are asyptomatic regarding course of treatment experience greatly appreciated.

Post Edited (Kimilio) : 12/31/2009 8:57:38 AM (GMT-7)


skofbengsk
Regular Member


Date Joined Oct 2006
Total Posts : 234
   Posted 12/31/2009 9:47 AM (GMT -7)   
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
Dx CD Oct '06 mom of 3 boys
Current meds: prednisone, Lialda, probiotics, oregano, green tea, vitamins, Fish oil, Past Meds:Asacol, entocort, flagyl, cipro


Kimilio
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/31/2009 10:10 AM (GMT -7)   
Thanx for the response. Information gathered helps with both of my sons. Since having youngest one diagnosed with it had other 2 sons tested since they seem to fit the profile more. And the oldest one has it. He is doing fine on 6mp. Daughter not tested but not showing signs or symptoms. I have hypothyroidism and had an uncle die of lupus. So there is a family tie to the auto-immune diseases. I am new to this researching on line stuff. What are some resources? Books, other types of doctors or specialists, etc.?

skofbengsk
Regular Member


Date Joined Oct 2006
Total Posts : 234
   Posted 12/31/2009 11:12 AM (GMT -7)   
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.
Dx CD Oct '06 mom of 3 boys
Current meds: prednisone, Lialda, probiotics, oregano, green tea, vitamins, Fish oil, Past Meds:Asacol, entocort, flagyl, cipro


Kimilio
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/31/2009 11:38 AM (GMT -7)   
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?

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 12/31/2009 11:50 AM (GMT -7)   
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.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Kimilio
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/31/2009 11:55 AM (GMT -7)   
Youngest has been put on tube feedings couple of times before and 90% food intake thru pediasure. Seems to help but is expensive and not covered by insurance.

skofbengsk
Regular Member


Date Joined Oct 2006
Total Posts : 234
   Posted 12/31/2009 12:51 PM (GMT -7)   
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?
Dx CD Oct '06 mom of 3 boys
Current meds: prednisone, Lialda, probiotics, oregano, green tea, vitamins, Fish oil, Past Meds:Asacol, entocort, flagyl, cipro

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