<p>Hello!</p>
<p>I was wondering if there are any parents on CC who have Lupus, or their kids/family/friends have it. </p>
<p>If you have any form of Lupus-- how did/are you coping with it? What advice would you give?</p>
<p>If your kids have any form of Lupus–how are they dealing with it? Do/did they have special accommodations in high school (504?) How are they adjusting to college life?</p>
<p>Any feedback would be great, thanks!</p>
<p>One of my best friends was diagnosed 5 years ago. I can’t remember the terminology but hers is external so it mostly affects her skin. She has since also developed Celiac Disease. She has a great doctor and it is mostly under control, but she is on some strong meds. She asks lots of questions so that she has a clear understanding of the side effects and such.</p>
<p>Any autoimmune disease is disruptive at best and I’ve learned that if you have one, you tend to develop others. If you have specific questions, PM me and I’ll ask her. Best of luck to you!</p>
<p>My mother was misdiagnosed with this 36 years ago. At that time I think her diagnosis was made based upon symptoms and a blood test. My mother did have a heart problem with symptoms from this. The doctor told me that my mother could be dead in 5 years (shocking for a teen to hear from a physician, and needless to say since he is wrong!). My mother is still alive and is doing very well, which is all the proof that I need that the doctor misdiagnosed her (she is alive and well 36 years later). Make sure that the diagnosis is correct first.</p>
<p>Stay out of the sun and tanning parlors, and go to a rheumatologist to get treated. They specialize in lupus and similar diseases.</p>
<p>I have an autoimmune/connective tissue disease that is “almost” lupus. The lupus diagnostic criteria is very strict, and these days they have many more tests and treatments than they did before the criteria were developed, plus the criteria are meant to be strict and are designed primarily for research purposes. My official dx is UCTD – undifferentiated connective tissue disease, the largest class of dx in most rhematologists’ offices. I have a lot of lupus systemic issues – fatigue, joint and musculoskelatal arthritis and arthralgia, rashes, gastrointestinal symptoms, neurological symptoms.</p>
<p>But nothing life threatening! Most symptoms are manageable through medication, time and energy management, a supportive family and medical provider and workplace, and the ebb and flow of time and symptoms. It’s challenging, and it depends on whether you catch me on a good or bad day.</p>
<p>My husband has a related autoimune disorder. He has greatly reduced his symptoms with a paleo diet. Gluten can be a huge trigger! He favorite book is the Paleo Solution by Robb Wolf. On the web see: paleodiet.com, robbwolf.com and marksdailyapple.com</p>
<p>Thanks for the replies! I’ll PM you if I have any questions, rom. </p>
<p>Seniormom- I didn’t change my diet, maybe I should, but I can’t stop the teenage munchies! 
Whenever I eat or drink ANYTHING I have horrible stomach pains. Maybe I should go on a food-free diet. </p>
<p>I do see a rheumatologist. That’s my regular doctor. Also an opthomologist , and a dermatologist (once.)</p>
<p>There’s no ideal place for me to go. I’m very sensitive to the heat and cold (drinking water from the fridge is like a death wish.) I consider it a feat everyday I wake up in the morning, considering I live in New England :)</p>
<p>My rheumatologist actually said the diagnosis is hard because lupus affects everyone differently. Mine was caught early (thanks, Nurse Mom.) </p>
<p>I’m prepping myself for dealing with student disability services in college. Hopefully they’ll cooperate. </p>
<p>I was diagnosed 3 years ago in middle school. Based on blood tests and symptoms (reynaud’s, hypersensitivity, fibromyalgia—my doctor says this “doesn’t exist”, and heart palpitations.)</p>
<p>My doctor said that it was still a stretch for diagnosis. </p>
<p>I am actually an outdoor camp counselor in the summer. I managed better than I thought I did. </p>
<p>Northeastmom- glad to hear about your mom!! Doctors have no faith in human willpower. I was told very bad news as well. My doctor said I wouldn’t be able to run because of joint issues, but here I am 3 years later and a varsity track runner (went to state championships:)) The look on my doctor’s face was priceless. </p>
<p>Silversas- I share other symptoms with you as well. I really feel bad when people catch me on a bad day :)</p>
<p>To all–thanks for taking the time to respond!</p>
<p>Seniormom, does your husband have celiac disease? I am wondering, because I have heard that grain-free diets sometimes help people with autoimmune diseases, even if they don’t meet the criteria for celiac disease.</p>
<p>But scleroderma has been ruled out? I tested positive on a blood test for awhile, but have tested negative for years – even tho’ I’m not cured, obviously. Everyone is different in terms of the course of their disease; keep that in mind so you don’t freak out.</p>
<p>There is a WONDERFUL book that discusses the side effects of prednisone; sorry I don’t remember the name. Nothing is better for reducing inflammation, but you really make a pact with the devil. I’m not sure that MDs recognize that. It is a total psychotropic on me, and after taking it for a year it took me nearly as long to be free of its effects. It also left me with mild cataracts. BUT, I would do it again. </p>
<p>For the Reynaud’s: Always have fingerless gloves nearby.<br>
Target carried some this past season, but I just cut off the ends of Old Navy fleece ones that were on sale. If you’re a guy, I found
Ragg (gray & white knit) ones at REI. I have never used those chemical hand warmer packets, but I know some people like them.</p>
<p>Just listen to your body and pay attention! Also, it can be difficult to differentiate between medication side effects (which can crop up at any time, even or maybe especially after years of use) and symptoms of the disease. </p>
<p>I had two SILs with lupus, but that was years ago. MIL has RA. Figure that DD is at higher risk for autoimmune disease than general population due to family history on both sides, gender, and ethnicity. At least we have seen strides in treatment, and hopefully there will be cures in my lifetime or at least hers.</p>
<p>CCsiteobsessed- Thanks for the thoughtful post. </p>
<p>I’m a girl and I dont take prednisone, I take plaquenil. my mom would die before she let me take that. I’ve seen the effects it had on my friend, aunt, and GC. I avoid it at all costs. Doctor is always trying to force more drugs–I don’t need any, though. And he’s opposed to natural things. Like eating this herb or that. He’s strictly prescription drugs. </p>
<p>Fingerless gloves would not do me any justice, it’s my fingers that I have to keep warm. I have insulated mittens that are AMAZING. but I can’t do much with my hands 
my grandma got me isotoner gloves that are good too, but I can’t last as long as I can with the mittens.
I also have RA (junior.)</p>
<p>Hi, CPU! Glad you have found ways to cope. I have a relative with lupus. She had an awful time with prednisone, but once they figured it out & her symptoms calmed down, they were able to discontinue it and she’s been doing quite well ever since. She wears broad-rimmed hats, long-sleeved shirts, long pants and sunscreen, as sun (we live in HI) is known to aggrevate lupus. As far as I remember, she didn’t have any special accommodations ever at any of her schools for her lupus. She graduated from HS & college & is married & working full-time for the past two decades at a job she’s satisfied with.</p>
<p>She has been so stable for so long, the internist who diagnosed her is now doubting she even has it, even tho it was confirmed by blood tests & symptoms. She has seen a rheumie but mainly sees the internist.</p>
<p>We have a friend who also has lupus & has had it for decades. She’s a great trial attorney for the federal government. She went thru HS, college & law school, married & has two lovely kids–one in college & one a JR in HS. She has had some bad flares but does not appear to have transmitted lupus to either of her children.</p>
<p>We have had great success in working with college disability offices about our kids’ chronic (non-lupus) health issues. The one U which wouldn’t work with us we crossed off the list of Us to consider. </p>
<p>I think all you need is to have your doc write a letter to your U about your specific needs which are related to your medical condition (that you & your doc can disclosed as much or as little as you’d like) and see what each U that you’ve been accepted at says. We waited until AFTER S was accepted before talking with the disabilities offices, just so his app wasn’t “flagged” as someone who might be “fragile.” Both kids did mention in their essays in passing about how they had overcome adversity due to health challenges and are stronger because of it but didn’t dwell on that.</p>
<p>Maybe if you could be a detective to see what things bother your stomach more and less, you might be more comfortable. You may also wish to search the web to see if there are suggestions on what others are doing to be more comfortable and/or avoid stomach pain. Good luck!</p>
<p>Please contact the SLE Lupus Foundation in NYC. There are many people there who can help you with information and treatment. They are one of the nicest organizations I’ve been involved with; they were instrumental with the discovery/development of the first new drug for Lupus in like 50 years.</p>
<p>@NYmomof2 - My husband does not have celieac disease. If you start reading about how gluten is metabolized in the small intestine you’ll soon see why anyone with any autoimmune issues should not touch the stuff. He actually doesn’t eat any grains or legumes. I have given them up and have seen so many positive health benefits I’ll never go back. I have a history of autoimmune issues in my family and don’t want to end up like my crippled old relatives!</p>
<p>@CPUscientist3000 - It won’t be easy at college to have a special diet, but the benefits may be so great that it’s worth it. My daughter tries to be gluten/grain/legume free at college because she feels so much better and more energetic even though she has no known health issues. Meatless Mondays make her crazy!! Run don’t walk to get The Paleo Solution by Robb Wolf! Do your research and don’t let your doctors tell you it will make no difference (they did to my husband even after he changed his diet and saw vast improvement in his bloodwork!) Good luck!!</p>
<p>borders is having a store closing sale, ill remember to get that book! thanks!</p>