Hi. I have been diagnosed with lupus, possibly due to lipator and will find out later in the year when it all has left my body. But I do carry the anti-bodies and maybe have another flare-up in the future. I have had digestive issues all my life and it has gotten so much worse. I go yearly to my gastro doctor and he hasn't found anything else. There are many foods I cannot eat due to horrible stomach cramping. Does anyone else with lupus have any IBS issues?
NJLinda, I had horrible IBS problems for 20+ years starting in my mid-20's, but preceded by other problems from early childhood & adolescence onward. I was Dx'ed years ago with SLE, anti-Ro auto-antibody, which *may* raise risk for GI problems. But that said, I've read that GI problems are very common in lupus, which I read to mean regardless of any SPECIFIC auto-antibody...?
From my lupus hardcover, I understand that drug-induced lupus (DILE) can show distinctly different labs than systemic lupus (SLE). I think hallmarks of DILE include ANA, anti-histone, and anti-SS-DNA (single stranded DNA, not the double-stranded DNA that's associated with SLE). Have you gotten copies of your labs?
I was diagnosed with SLE years ago & have taken Plaquenil since, and avoided sun. Miraculously, my awful GI problems abated quickly, but I still have to avoid certain foods: fried, fatty, and spicy.
I feel for you, I hope you post more, and I hope you get the help you need. All my best, Vee
Hi Veej, thanks for your response. My stomach problems have been on-going from my 30's but the last 2 years it has been almost unbearable! Some of my numbers are as follows: antiextractable nuclear Ag RNP antibodies is 7.2
Anti-dsDNA antibodies is negative, equivocal, positive, sed rate is 17, antinuclear antibodies IFA is negative, borderline,positive, homogenous pattern is 1:80. C-reactive protein quant. is 3.5, creatine kinase, total serusm is 95, compliment C4 35 and complement C3 is 156. Still trying to figure out the numbers but was told to stop lipator 2 months ago and almost instantly a lot of my muscles aches have diminished so the doc thinks drug related. I was on lipator for over 12 years and never affected me before. Any info or insight about these test results, please feel free to respond. I am currently on no medication for lupus yet. But I do feel the hurt in my bones. Also 2 years ago I underwent a 360 fusion but everything turned out fine with that. I was also diagnosed with fibro, which is no surprise. So thanks for reading and helping me. Hoping we all feel good every day! Linda
Hi, did your labs show reference ranges? If not, your dr. should explain. Offhand iems below ring some bells with me (but I'm just a patient):
An elevated ESR shows inflammation (from disease, virus, bacteria, etc.)
Anti-RNP is seen in both MCTD and SLE.
C3 and C4 can depress in SLE (they get depeleted by inflammation).
Think C-reactive protein can elevate early, in advance of "true" RA or lupus.
I think muscle pain is a known downside with cholesterol meds. A relative of mine was evaluated for DILE and SLE; she discontinued the drug & improved over a few months. But I think her rheumatologist DID run tests for anti-ss-DNA and anti-histone, which makes sense if DILE is deemed a possibility.
As you said, I too wonder how long a culprit drug typically takes to induce DILE. 12 years seems like a long time to me, too: I *think* I've read DILE effects likely occur within the first 2 years. So I think you're right to keep following up. Maybe the Lipitor was causing muscle pain, but not true DILE---in which case your bone pain (arthritis?) and GI problems could be entirely separate issue(s)?
Does your bone pain correlate to barometric changes? I've had pain in long bones (shins & arms) from early adolescence, with joint pain arriving later. My pain is worse during overall flares, but also the day before a weather front arrives. Then by the time rain/snow starts, pain has lessened.
I took various drugs for IBS over the years, but none helped whit. (From that fact alone, my current rheumatologist thought I should have deduced my problem wasn't simple IBS. Yeah, right. Am I a doctor, I demanded? ) Have you ever taken anything for the IBS, and did it even vaguely help?
Hi Vee, was out all day and am suffering for it now. Going to bed soon but wanted to reply. My doctor did not explain too many things to me but I will have a load of questions for her at my next appt. in June. She did mention MTCD to me. I am going to look for a specialist of lupus in my area and try to get an appt. for more explanations and questions that I have. It's a shame that you know a lot about this disease, meaning I'm sorry you have it too. YES my bones and joints react to the weather. It has been rainy for the last 4 days here and I can tell without looking out the window . My IBS has settled down quite a bit, yah, so that pain is gone. I think I will get ahold of my gastro doc to find out about food intolencesand what I can take to stop the cramps.
I started taking align for my IBS and it does help me. Well thank you for all your help and will keep in touch. Linda
You may have just hit the nail on the head by mentioning food intolerances or allergies . . . and here is what I think you should try.
Instead of relying solely on your doctors or western medical allergist, try to do some detective work yourself and learn to test for your own allergies thru MRT (muscle response testing). You have suffered so much with lupus, stomach cramps, fibromyalgia symptoms, etc. and no particular doctor has rid any of this or even particularly knows what is causing it so I think you need to gather some information on your own and see how your own body will react to the following:
NAET is a non-invasive, non-drug, mild holistic technique method to test and treat for allergies with a blend of allotropic, oriental, kinesiology, and chiropractic techniques. My wife and I have used these techniques ourselves for years for immediately testing for and eliminating allergies from our lives. It is the only technique we have found that works for us really well.
When you start discovering what is really bothering you allergy-wise, you won't hardly believe it. For fibromyalgia, you can test yourself for nutrition like Vitamin A, C, B-complex, etc. Then as we found by accident for my wife's increasing fibromyalgia symptoms, she was allergic to poly-urethane in foam and mattresses and carpeting padding along with polyester as a fabric in clothing. With these two being allergens and her body being constantly wrapped in these, not-knowing these were particular allergens, her pain was increasing to a point of non-tolerance. Tylenol wouldn't even help . . . BUT when she tested positive to them by using MRO ourselves and then was treated her for those two allergens by ourselves using naet techniques, all of her pain caused by those allergens disappeared almost immediately and has not returned. . . and guess what, no more fibromyalgia symptoms. We're not saying these allergens are everyone's problem, but just showing you what possibilities MRO with your own detective work might uncover.
This is just an example of what you might discover when you gather some knowledge about the newer "energy medical technology" available today and learn to test yourself or with someone else via MRO. It is easy to learn and very accurate. It's been around about 30 years and is a proven health resource.
Now armed with this information, I hope to see you start discovering what might be wrong with your body so post here what you find.