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Old 03-13-2008, 02:44 PM   #1
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Remicade induced Lupus

My 13 year old daughter has been on Remicade for 4 years (for Crohn's). In the past few months she has developed all of the signs of drug induced Lupus. Her symptoms read exactly like the Centocorp literature.
She has chest pain, shortness of breath, intense bone/joint pain, sore throat, facial rash, etc.
The doctors keep doing tests and keep insisting that it isn't Remicade induced lupus - but the Crohn's itself. It was even suggested by a rhuematologist that her Remicade dose be doubled or tripled.
This doesn't make sense to me. Does anyone know what specific tests would indicate if this is drug induced Lupus?
Thank you. Any help would be greatly appreciated.

 
Old 03-13-2008, 05:12 PM   #2
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Re: Remicade induced Lupus

Fran, hi. This basic info is from articles I collected when my sister-in-law was being evaluated for DILE, and also from Dr. Daniel Wallace's hardcover lupus book. FYI, Dr. Wallace's book is in most libraries & bookstores. I really recommend you find it & browse key sections. In DILE---

ANA: positive 95% or more of the time.
Anti-histone: 95% or more, but also present in 40% of SLE patients.
anti-ss-DNA is common, while anti-ds-DNA is rare.
Major organ involvement (kidney, CNS, etc.) is very rare. In DILE, milder problems like joint pain, skin rashes, fatigue, etc. are quite common.

From your knowledge of Crohn's, are your daughter's symptoms ALSO likely in Crohn's? If not, then I agree that your rheumie isn't listening well enough.

FYI, according to Dr. Wallace, lupus & Crohn's hardly ever occur together, maybe only a couple of cases were ever reported worldwide. But I'm not sure whether that includes the *DILE* form of lupus; I've always pictured DILE to have its own logic & "rules"... Maybe your rheumie is stuck on that?

One thing that really strikes me is your daughter's age. I learned only after being Dx'ed with SCLE how hard lupus symptoms hit during periods of hormonal change. I had a full year of tremendous joint pain, fever, etc. from 13 to 14. (I wasn't Dx'ed until my late 40's.)

Just curious: on what diagnostic tests were her Dx of Crohn's based? I had 20 years of terrible GI problems, with the gastro's convinced it just HAD to be Crohn's or ulcerative colitis. Lots of tests; no signs of either. After being Dx'ed with SCLE & starting Plaquenil, my GI problems stopped on a dime. And I read later 45% of people with lupus have meaningful GI problems.

Anyway, Dr. Wallace covers this & much more in his book. I hope something here helps somehow. Let us know how your daughter & you are doing, OK? Bye for now, with best wishes to you both, from Vee

 
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Old 03-13-2008, 08:54 PM   #3
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Re: Remicade induced Lupus

Veej,

Thank you for the information.

You asked how my daughter's Crohn's disease was diagnosed. First of all it took several years and 3 different major medical centers to get the diagnosis. We spent several years with doctors claiming it was TB on one extreme or emotional/behavioral problems on the other. The eventual diagnosis of Crohn's was made based on biopsies taken from upper and lower endoscope procedures.

My daughter's case is not typical Crohn's. While she has pain, her main symptom (pre-Remicade) was "wasting away". She was basically slowly
dying of starvation. Even with medicine (pre-remicade), she continued to waste away for another 2 years and weighed less at 9 years of age than she did at 6.

Her GI doctor treats her for Crohn's. He did say one time that he is not sure she even has it. However, Remicade allows her to grow. She has reached normal height and weight on Remicade. (She has to have Remicade every 5 or 6 weeks or she starts losing weight quickly.) Her GI doctor believes Remicade is very necessary, but he can't explain the new symptoms. He referred us to a pediatric Rhuematologist because of the new symptoms. The Rhuematologist absolutely says there isn't any arthritis or lupus. The Rhuematologist put it back to the Crohn's doctor and said to double or triple the Remicade.

No one is willing to discuss the idea of Remicade induced Lupus. I called Centocorp myself, and they just say it is extremely rare. The GI doctor says if we go off Remicade, we will not be able to start it back up, because stopping and starting always leads to allergic reactions.

She is due for Remicade again in a week, and I don't know what to do.
Thank you for listening as I vent.

 
Old 03-14-2008, 04:09 AM   #4
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Re: Remicade induced Lupus

Fran, wow! You two have a lot to deal with. So, what did you think when the GI dr. said he's not even sure it's Crohn's??? That's NOT reassuring, especially given that Remicade is ALSO used for OTHER inflammatory conditions, like RA and psoriatic arthritis (I just looked it up).

Have you saved copies of all your daughter's lab results? i.e., has she been tested for a WIDER range of systemic inflammatory conditions that can also cause GI problems? Including lupus, Celiac disease, etc.?

Like I wrote last night, what I learned is that even when you think you've been tested thoroughly, maybe you haven't been. You look at lab results, but can't spot what WASN'T ordered. And you can't fathom the subtle ways in which results may be misinterpreted, esp. when you have some sort of "variant" that they've never seen.

Are her doctors *teaching-hospital affiliated*? They're the ones who see vast numbers of patients with both the "classic" presentations PLUS all the "variants".

Bye for now, Vee

 
Old 03-14-2008, 06:00 AM   #5
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Re: Remicade induced Lupus

Fran,
I'm sorry things have been so difficult for your daughter and yourself lately. After reading your post, I just wanted to share with you a little of my medical history.....When I was a young child I had a lot of bowel pain diareah, loss of bowel control. Sometimes my gastric sounds were so loud you could hear them from across the room My parents took me to a Dr. who Dx"d "spastic colon", I don't recall any bloodwork being done. I was chronically underweight as a child (60 lbs. at age 12-13), and would sometimes pass food after just having eaten it. This the Drs. said was caused by a valve at the bottom of my stomache not working properly (once again no bloodwork or diagnostic tests). I had more trouble as a teen and later during my first pregnancy I was DXD with diverticulitis during a hospital stay for dehydration etc. caused by severe gastroenteritis and diareah. Not too long after that I was re-Dxd as IBS. Finally during a 2 month hospital stay during my last pregnancy, I was DXD as having Crohns on the basis of observable symptoms and 1 blood test (what the test was I don't recall now). However as soon as my OB began giving me Celestone (steroid) injections to speed the maturity/growth of the baby.....all of my symptoms vanished. I continued to have bouts of bowel trouble, and just thought it must be normal for me. Later, a whole host of other symptoms developed all at the same time, and I was DXD with SLE after several tests. Since recieving treatment for SLE, my bowel issues are greatly improved. As for being underweight, I am 5 ft. 9 3/4" tall and for a long time weighed between 110-123. I have gained weight from being on the steroids & plaquenil and being able to absorb the food I eat, and now maintain a healthy range of 140-155. I might add that when I would get sick with bowel trouble, it was not uncommon for me to drop 10-12 lbs. a week. My point being that Lupus is a sneaky disease, and it is sometimes mis-diagnosed. I agree with what VeeJ said about Remicade. A second opinion couldn't hurt.

 
Old 03-16-2008, 07:00 AM   #6
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Re: Remicade induced Lupus

You all have given me a lot to think about. I have posted before that I have been diagnosed with UCTD after sitting on and off the fence about a possible lupus diagnosis for the past 7 years. My main issues are horrible fatique, and joint pain. I also have srojens and raynauds disease. I take plaquenil, mobic, and on and off pred. My 4 year old daughter has just been diagnosed with crohns disease and takes azulfidine, metronidazole, folic acid, and many other supplements. Her ANA is negative, and all of her tests were positive for crohns. (upper gi sbft, colonoscopy, endoscopy with positive biopsies, crohns antibody testing positive) I still have this underlying fear of lupus for both of us. She also had complements run, and her c3 was low, but she looks good otherwise. She has elevated liver enzymes, and high CRP and sed rate when flaring. It makes me very nervouse with her only being 4 years old.

Fran2,

I am so sorry about your daughter. Crohns sucks! We are very new to this, but it has certaintly been a rocky road for us. I also have read of drug induced lupus with remicade so I can understand your fears. I would try to get a second opinion from another rheummy. The remicade could be masking other blood levels--I would think????? I do hope your daughter gets to feeling better, and you get some answers. Take care.
Kelley

 
Old 03-17-2008, 08:02 AM   #7
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Re: Remicade induced Lupus

Fran2---

I just read something JAW-DROPPING about REMICADE, in an article about Sjogren's. As sort of an aside, tt said that people with lupus should NOT take Remicade, as it can WORSEN the lupus. Maybe you want to (1) verify this with her rheumie(s), and (2) ask whether & how they've ruled lupus OUT. Because if she could possibly have lupus, your nagging concern about her taking Remicade might be VERY MUCH ON THE MARK.

Good luck in your follow-up & sending you both my very best wishes, Vee

 
Old 03-17-2008, 08:15 AM   #8
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Re: Remicade induced Lupus

Fran, This is a "P.S." Apparently lupus-like symptoms have been seen people on Remicade, incl. positive ANA & anti-ds-DNA, facial rashes, etc. Have you found much info on this?

And I forgot to ask if your daughter's doctor ran specific autoantibody tests, meaning BEYOND the basic ANA test---meaning anti-ds-DNA, etc. Plus, it can't hurt to ask for & keep copies of her labs.

I really hope you've made headway since first posting here. All my best, Vee

 
Old 03-19-2008, 12:05 PM   #9
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Re: Remicade induced Lupus

Hi again. Thank you everyone for all of your support. I haven't checked this board in a few days because - on top of everything else - my daughter had a serious drug reaction to an antibiotic. I have been totally tied up dealing with that.

She missed 9 days of school due to the combination of the staph infection and the reaction to the antibiotic. She is back in school now, but is having trouble making around the building in the time allowed between classes. I have met with her counselor about all of this, and I hope they take it easy on her.

Apparently, this drug reaction also greatly mimicked lupus type symptoms. Instead of appearing as a new problem, it just seemed like everything she was going through (extreme fatique, joint pain, chest pain, throat & mouth pain & swelling, breathing difficulties, stomach pain, and a variety of rashes) just got more intense. She is over the worst of it now.

The doc's have decided that my daughter's general "joint pain" is more bone pain. They are looking at a significant Vitamin D deficiency that is due to several factors (poor absorbtion due to Crohn's, little sun exposure in winter, and the general needs of a 13 year old.) They put her on Vit D a few months ago, but it hasn't raised her levels. Consequently, they are greatly increasing the Vitamin D supplement. I guess it will take a few months to see if it helps. The doctor says that Vitamin D deficiency will cause a lot of bone pain.

She has had a lot of blood work. Her ANA titer was very high, but her gastro doctor is back to thinking it is all just Crohn's. Apparently, her other tests do not suggest Lupus.

In summary, the doctors basically think that Remicade is still the right medicine but that it is becoming less effective for her. They want to stay with it as long as they can. I guess this is the best opinion of several good doctors.

Thank you again for your support. I will continue to watch this message board for information.

 
Old 03-19-2008, 02:24 PM   #10
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Re: Remicade induced Lupus

Fran, hi. I'm so sorry to read you two have had an awful couple of weeks. I sure hope she's improving.

If you haven't done so already, you could ask for & keep all her lab results in your home files. I guess the one thing that still sticks out for me is her very high ANA. Do any of the books/articles you've read on Crohn's mention ANA? (I'm just wondering if you've ever seen mention of this in print.)

On her labs, did you see the "other tests" that the dr. feels do not indicate lupus? In addition to the standard CBC, etc., you should see tests like anti-ds-DNA, anti-ss-DNA, anti-Sm, anti-Ro (SSA), anti-La (SSB), RF, antihistone, anti-RNP, etc. (there's a whole slew). If you see all those listed, then you'd at least know that the bloodwork done was thorough.

There are antibiotics that are known to exacerbate pre-existing lupus. There are also ones known to induce a form called "drug-induced lupus" (abbreviated DILE). Minimally, you could check the antibiotic she just took against those lists & see what you find. I don't think a match is "proof", because a drug reaction isn't necessarily a LUPUS reaction. But maybe you'll spot something worth discussing with the dr. who prescribed the antibiotic. I'm sure you NEVER want her to take it again.

Anytime you need any of us to talk with, you know where to find us! I send you both my very best wishes, Vee

 
Old 03-22-2008, 10:42 AM   #11
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Re: Remicade induced Lupus

Quote:
Originally Posted by fran2 View Post
My 13 year old daughter has been on Remicade for 4 years (for Crohn's). In the past few months she has developed all of the signs of drug induced Lupus. Her symptoms read exactly like the Centocorp literature.
She has chest pain, shortness of breath, intense bone/joint pain, sore throat, facial rash, etc.
The doctors keep doing tests and keep insisting that it isn't Remicade induced lupus - but the Crohn's itself. It was even suggested by a rhuematologist that her Remicade dose be doubled or tripled.
This doesn't make sense to me. Does anyone know what specific tests would indicate if this is drug induced Lupus?
Thank you. Any help would be greatly appreciated.

Last edited by julied57; 03-22-2008 at 10:56 AM.

 
Old 03-22-2008, 10:49 AM   #12
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Re: Remicade induced Lupus

Hi,I am new here and hope your daughter is doing MUCH better.I too have crohns and have had it since a child.Wasnt diagnosed til I was in my 20's..And by the time I got the diagnosis I was VERY sick and they could see I had crohns all thruout my intestines.I have been on LOTS of things and MANY of them poisoned me.I had to be hospitalized because of the meds,and pancreatitus.
I was given remicade and it worked very well the first three times.The 4th time seemed ok too and exactly a week later,I woke up paralyzed and in excruciating pain.The only thing I got out of the Dr's was they thought it was a delayed reaction to the remicade.
It was a nightmare.
I have had my crohns under control for QUITE a while but the pain in my body is unreal.I finally went to the Doc again and they said my sedrate was 120 and they cant figure out what is going on.I have had tests and more tests.I am anemic,low rbc,wbc and sodium.But go to a new Doc on Monday.If you have any idea what is going on or have learned more about remicade PLEASE let me know! Would soo appreciate it.
God Bless!

 
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