This is going to be pretty long and i apologize but I would love some advice.
I have had crohns colitis for 8 years and I wish I knew what I know now back then, so I was hoping someone who has dealt with lupus could help. Particularly people with crohns and lupus or multiple autoimmune diseases.
The past year I've been having strange symptoms, such as stomach pain (unlike the usual flares), 30 pound weight loss, really bad joint pain in my hands (never had it in hands before, only knees) and fatigue.
I though it was a crohns flare so I had several colonoscopies which showed my disease wasn't active, or not active enough to be causing my symptoms. Because they couldn't find the source after mris, ct scans, colonoscopies, blood tests, etc. they decided it must be IBS with small intestinal bacterial overgrowth on top of crohns even though the pain feels at times worse. And I would know after 8 years of having it and the scarring pattern in my intestines to prove it. Ended up going to the ER 3 times for this but no answers.
This past month I got a butterfly-like rash on my face. I have gotten these before but this one lasted a lot longer (10 days) and was more distinctive, obvious. I took a picture and called my GI who told me to see my primary. Primary said it looked like lupus and tested me for antibodies.
I came up positive for ana speckled and negative for dsDNA. They said im negative for smooth Dna antibodies too. He says to see my rheumatologist who I saw earlier this year because I all the sudden got really bad joint pain in my hands. Was told the joint pain looked like crohns arthritis that would go away when my flare subsided, only now I know I wasn't in an actual crohns flare at all. I still have it too.
Anyway, now my GI is saying that people on remicade get ANA positive results. I see the rheumie next week and I'm also waiting on the titer results of the ANA test.
I'm confused because I seem to fit the symptoms of lupus but they overlap so much with crohns that doctors are being extremely hesitant to even test me for it. I think it seems highly suspect that I would test positive at the same time I have a malar type rash...
Is this what you guys have to go through to get a diagnosis? Does anyone deal with multiple autoimmune diseases, and how did they identify the two as separate? And anyone who has gastro issues with lupus, can u tell me what your symptoms are? Anyone diagnosed with lupus while on remicade? How long after taking remicade did you get lupus like symptoms?
Here's my symptom list:
- malar rash
- positive Ana (waiting on titer)
- break out in little red dots when I'm in sun, especially on legs
- weight loss of 30 lbs
- joint pain especially in hands
- stomach pain
- low fevers around 100
- hair is thinner
May or may not have to do with anything:
- frequent nose bleeds
- swollen ankles
- once had clotting issues that forced a liver biopsy to be cancelled (a while ago)
- on remicade
- itchy skin
- night sweats
- bad menstrual cramps
- toenails sometimes turn blueish but not fingers
Thank you for reading this far and I hope I can find someone who can relate. It's hard enough to find someone with just crohns. It's especially hard because the symptoms all overlap and one specialist tells me to see the other, I feel like I'm being tossed around with no bigger picture perspective.
I'm sure ill find out a lot more at my rheumie appt as well as when I find out the titer rate, but that's a week away.
Wish I could post pictures. I'd show u the face rash.
Hi, "cm", and welcome! I also had episodic GI problems so severe that Crohn's or Ulcerative Colitis seemed the most logical candidates. Also, fatigue, hair thinning, weight loss, migraines, bladder problems (including a bout of stones that caused a total blockage), miserable periods (always painful, sometimes lasting weeks), B-12 & Folate deficiency, joint pain and pain along the long bones (esp. shins). The usual GI tests (done multiple times) didn't find evidence of inflammatory bowel disease.
Some of my problems dated back to adolescence. At age 13, I had almost a year of pain so severe that I could barely walk. Low-grade temp, elevated sed rate & depressed WBC are what I remember (was many years ago).
I finally started getting photosensitive rashes on upper arms and back, for which I saw many local dermatologists. Had multiple skin biopsies but still no answers. My PCP suspected lupus but the other specialists to whom he referred me didn't agree. Finally took myself to a teaching hospital rheumatologist, and he sent me to one last skin specialist, a dermatopathologist, for one last biopsy. Diagnosis was lupus, positive for anti-Ro. The rash was Subacute Cutaneous Lupus Erythematosus, abbreviated SCLE. (FYI, there's a sticky post = permanent info post on skin problems. The various "stickies" are located above the user threads.)
You could also read the "sticky" that lists "alternative criteria". This list, compiled by a well-known British lupus specialist, describes problems seen in earlier life in people who later develop lupus. (I matched on almost all, scary.)
I've taken Plaquenil & avoided sun for over 10 years. Interestingly, once I started Plaquenil, I haven't had a single severe GI episode.
I hope you post more when you read this & that others who have had GI issues weigh in, too. I truly feel for you. Hang in there! All my best, Vee
Thanks for your reply! I got the titer results back and they are 1:160. I don't think that is considered high or low. I have a rheumie appt on Wednesday and I'm almost positive I will land in "maybe" land. I had symptoms of Crohn's for a year before being properly diagnosed, looking over my past labs though I can see why - takes a while for my labs to catch up with how I'm feeling. Is that true with lupus?
It's just really frustrating because the pain is similar in intensity to a Crohn's flare but there's no evidence of inflammation in my intestines. It's bizarre. I used to be able to push myself through things before in a flare but now I can barely get through the day.
Here are the other results of the tests ordered for lupus:
Ana= positive speckled 1:160 titer.
scl 70 ab= negative.
smith ab= negative.
anti dsdna= negative. 3 (standard range 0-24)
I've been on Remicade for 7 years and my GI said that a lot of people who are on Remicade test positive for ANA.
I looked through my records and found that I tested negative for ANA the same year I started Remicade.
But then most recently found out my previous primary (who tested me for everything under the sun b/c we couldn't find what was wrong) tested my ANA 9 months ago and it was negative. But back then I didn't have joint pain in my hands (7 months ago) or the face rash (this month). It seems pretty significant to me.
I guess I'm wondering, if Remicade causes half the people to test positive for ANA, why would it take 7 years to show up for me? And then just happen to show up with a face rash and joint pain...
I have another remicade appointment coming up soon. If it is drug-induced lupus, I don't want to keep feeling this way until my next round wears off- months from now. But then there is the paradox of if I were to go off of it, then I could fall out of the remission with Crohn's. But then again, I've had my suspicions that it is the steroid shot of solumedrol they give me before my infusion that is what is making me feel better not that actual remicade. At least I'm experienced enough to know to get my blood tests done before the remi/steroid infusion to get accurate results.
I noticed I wasn't tested for antihistone antibodies, which seem to correlate with DIL. I'll probably ask for this test and rethink the remicade if it's positive. Do you know much about the antihistone antibody test?
Also, are there negatives to going on Plaquenil if it turns out you don't have lupus? Do people stay on Remicade if it is induced lupus and take plaquenil?
So many questions to ask my doctor. It seems like without a positive antihistone antibody test it's going to be a wait and see approach though. I wish everything just had a definitive test. Yes you have crohn's, no you don't have lupus. Lol. Hopefully one day soon they will with all these advances with DNA sequencing. But who knows, maybe it will just get harder.
Hi. I just saw a very blunt statement about Remicade, that some patients develop a "lupus-like syndrome"; AND IF THEY DO, THEY MUST DISCONTINUE. That term might mean something more SLE-like than DILE-like, I don't know...
In your shoes, I'd read all the Remicade drug info I could find before my rheum. appt. Among the things I saw listed as possible: rashes, neutropenia (low neutrophils), leukopenia (low WBC), etc.---in other words MULTIPLE things also possible in lupus or that closely mimic lupus---not solely ANA.
I believe the two results most redolent of DILE, anti-ss-DNA and antihistone, are just specialized blood tests that could easily be included with the others I suspect your rheumatologist will run = all the antibodies seen in SLE.
Have you tried asking on the Crohn's/Ulcerative Colitis board, to find people who've experienced issues while on Remicade?
I hope your new rheumatologist and your gastro confer, sooner rather than later. From what I read, I think you're absolutely right, that your issues require input from both & full agreement betwixt them. In your shoes, I'd point quickly and forcefully to the elephant in the room, and repeat as often as necessary this question: "Can I remain on Remicade if I'm developing lupus-like symptoms?" Looking forward to your updates & wishing you good luck, hugs, Vee
Last edited by VeeJ; 04-30-2013 at 03:06 AM.
I wanted to give an update on what's been going on. So, I had a really bad episode a couple of weeks ago where all my symptoms, GI, joint pain in hands, a brighter face rash and very blue feet occurred simultaneously. I realized that my feet and face rash are coinciding with my GI symptoms.
I was referred to a dermatologist, who turns out to be a really smart dermopathologist and he was "very suspicious" and "very concerned" that it was lupus after examining me, hearing my history and seeing my pictures of my rash (of course it goes away when i see him). So he is ordering another ana panel and more specific tests, like the anti-histone antibodies that are common in dle and a urinanalysis. He said my symptoms are consistent with lupus but that he is unsure if it is drug induced by remicade or if it is co-existing with crohns.
I'm also getting my remicade levels tested at week 7 so my GI can see if too much remicade in my system is causing my symptoms. I can't just stop it because theoretically it's keeping my crohns in remission and if I were to fall out of remission, it would be a game of chance going back on it because the longer you stay off, the more likely you are to build antibodies and have a reaction. It's a catch-22.
I should get some answers within a month after all these tests. I'm really happy I went to the dermatologist because he just saw a case of dle from remicade and is able to determine if that is what is going on with me. None of my other doctors have seen it before. I'm also supposed to go in when I get the rash again to have them look at it in person, but I live far away so it's not so easy.
Ill try to post again when I get more results. It's hard going from doctor to doctor to doctor but you can't give up, I went to the dermatologist expecting the same answers "it could be, but it's very rare" but instead I got someone who really knows a lot about what I'm going through, has seen it before and seems very interested in my case. I think one of the reasons why there isn't more research is because it encompasses so many body functions so vaguely that no one specialty deals with it entirely.
YAY, what good news! Your dermatopathologist sounds like a terrific choice & one who can arrive at answers. We'll look forward to updates, bye, Vee
P.S. Dermatopathologists have two specialties, dermatology and pathology. The one I saw (years back) had a rare gift for communication plus all that knowledge of body chemistry. Maybe it takes a unique personality type to pursue both specialties? I dunno... only that my appointments were so helpful and so scientifically concise that they still stand out in my mind.
CM, a helpful piece of infor would be if your lupus=like symptoms were present before the Remicade was started. Timing of events is so important, but sometimes hard to remember which came first. Anti-histone antibodies are not always present in DIL. I have a combo of lupus and RA, and just recently went off Remicade because it definietly was making my lupus worse, but my anti-histone antibodies were negative. I would seriously consider getting getting off the Remicade. There are other treatments for Crohns, and you have too many symptoms of lupus to ignore. If lupus occurs on Remicade, the Remi is stopped, not just continued with Placquenil added.
It certainly is possible you are responding to the steroid, but the effects are short term (a few days) compared to the Remicade effects, which should last 1-2 months if it is helping your Crohn's. Many people with lupus have symptoms first, with negative labs, then ANA becomes positive months or even years later. Is it possible your Crohn's symptoms, since you have no inflammation in your intestines, is really a manifestation of lupus? Many lupus patients have significant GI difficulties, gluten intolerance or celiac disease among them. I would make sure you have been tested for celiac, and watch how you respond to wheat and other gluten containing grains. Beer is high in barley gluten and is a good dietary test when gluten allergy is suspected. Good luck with all this. Glad you had a rash picture and found a good derm!
Cm, you mentioned a GI scarring pattern in your first post. I just read how tricky it is diffentiating Crohn's from ulcerative colitis (which I didn't realize), and that some patients have features of both. Was your scarring pattern somehow definitive for Crohn's, as in patchy vs. continuous? Or affecting innermost lining vs. affecting all layers?
I just saw a statement in one of my lupus hardcovers, that Crohn's and lupus HARDLY EVER co-exist: only a few simultaneous cases have ever been reported worldwide. But in contrast, UC is found in 1 to 4% of lupus patients.
Or, some lupus patients have nasty lupus-induced GI problems that aren't UC, Crohn's, or Celiac. (That's where I was, for many years.)
Or, separate from those Crohn's/UC/lupus possibilities, another possibility is (apparently) that it's the Remicade causing "lupus-like symptoms"...
All these possibilities make me glad (all over) that your dermatopathologist is conversant with Remicade side effects. Did he ask to review your original Crohn's dx? That might be interesting, in that he is a pathologist, too... Main thing is that he's obviously thinking on multiple fronts, which is always a good sign. Hope you learn more soon.
I definitely have crohns colitis, because of the patchy scars throughout my entire colon, but it is limited to the large intestine and doesn't affect the ileum or small bowel (unlike most crohns cases). Although I do have chronic gastritis, gerd and small intestinal bacterial overgrowth.... So I have doubts on whether its really limited to just my large intestine, but so far all the imaging and capsule endoscopy stuff says so.
I wonder if having crohns than resembles uc can affect the odds of getting lupus though vs someone with small bowel crohns.
I've been trying to listen more to my symptoms lately and ive noted to my drs that there's a difference between the mysterious pain (with bad all over abdominal pain, blue feet, malar rash etc) and my crohns pain, because I had a specifically crohns flare (with blood and all) recently and it was markedly different, familiar and honestly didn't bother me as much as this mysterious pain.
I've had crohns for 8 years and been on remicade for 7, the mysterious symptoms, including hand joint pain (used to only be large joints like knees after excersize) didnt start until a year ago. I've tested negative for celiacs through endoscopy every time but all the doctors agree that my GI symptoms could be a manifestation of lupus. Unfortunately I have chronic gastritis, gerd and fatty liver too, so drinking alcohol never agrees with me. I've also been tested for food allergies with nothing popping up and I doubt a gluten sensitivity would cause the amount of pain I'm experiencing. I'm also lactose intolerant, but it only causes minor discomfort.
I'm thinking about stopping remicade, but it's a catch 22 because if it is dile then I can't go on other TNF blockers and I'm also at risk for hepatoxicity so imuran and 6mp are out, and I get horrible pred side effects (plus you can't be on it long term anyway). If I stop remicade and the symptoms of lupus persist, then I risk a crohns flare and a lupus flare. If i build up antibodies to remicade, then i cant go back on it.
So in the next few weeks before my next infusion, I'm waiting for the extra tests my derm ordered and he'll give me his advice on what he thinks I should do which I will weigh with my GIs advice on whether or not to go off of it.
Re: your sentence---"I wonder if having crohns than resembles uc can affect the odds of getting lupus though vs someone with small bowel crohns." That's exactly what I was wondering, too, and whether your GI condition might actually be more UC-like than Crohn's?
Are different meds are used for UC vs. Crohn's?
Are your new dermatopathologist & your gastroenterologist in the same hospital system? I sure hope they're already conferring & that your lab results are helpful. I think you're asking excellent questions. Thinking of you, Vee
The biggest distinction between the two is the surgery option, uc can be essentially cured (you would still have extra intestinal symptoms though) by taking out the colon, whereas crohns usually comes back at the site of the surgery and there is a chance it could develop somewhere else in the digestive tract, so they avoid surgery as much as possible. Many people are diagnosed with uc, get their colon removed and then they find out they actually have Crohn's disease.
Overall, it seems the delayed release ones are more effective for uc than crohns whereas the systemic ones are equally as effective. From what I understand, it seems that there may be different branches of these diseases that react differently to different medications and they are looking into people's DNA to determine why one medication works for one and not the other with the hope that one day they can custom tailor drugs that you are more likely to respond to instead of a trial and error approach.
I do have doctors in the same health system at one of the best research hospitals for crohns, but it can be difficult because it's two hours away, albeit near family. And because I have an HMO I can't have doctors both there and locally unless I need to go to a local ER or urgent care. But the system itself is really good, I can see all my blood test results in an app on my phone almost immediately.