I am awaiting an appointment with a Rhrumatoligist after being "misdiagnosed" with Ulcerative Colitis and treated for the same for a year and a half. Without significant improvement from the meds, I was sent for a full colonoscopy. The test revealed no explanation for my deliberating joint/muscle pain, nausia, etc, (the list goes on) my doctor has mentioned Lupus as a possibility.
What is a butterfly rash? How long does it last? I do get something across the bridge of my nose and cheeks that looks almost like "flushing" of the skin but it doesn' t usually last a long time.
My first cousin has Lupus, is it hereditary?
Can you still have Lupus without testing positive for ANA?
How long does a diagnosis usually take?
My hair falls out like crazy, does it ever stop?
I can only speak to a couple of the points you raised, and hope that others will chip in soon. I'm up late hoping my stepdaughter will try reach us again tonight. She's in S. Florida, need I say more?
Anyway, I was tested for Crohn's, ulcerative colitis and you-name-it, repeatedly, over 25+ years. I had some terrible episodes and would end up the hospital for tests & hydration. Like with you, they never found a blessed thing---no signs of any systemic disease. They kept considering my problem "functional" and suggesting I "de-stress". Hnnnnnh. Lotta good that advice did.
I only found out in year 2000 that some lupus patients do "present" with wild GI problems. I was surprised---but, then, the whole lupus thing surprised me, too...
On lupus being hereditary: strictly speaking, the books all say "no", but that "predisposition" does run in families. The causes are thought to be genetic (multiple genes, not a single one), with environmental triggers prob. also playing a role. Your odds are higher when a first-degree relative (mom, dad, etc.) has it, I've read. Automimmunes do tend to run in families, also; but one member might have one autoimmune, and another family member gets some different autoimmune. (For example, my sis has asthma.)
As to having lupus without a positive ANA: yes, but ANA-negative *SLE* is not very common, I've read. BUT there are lupus "subsets". I just wrote a long post to another new person on this very point.
I ended up being Dx'ed with a subset, SCLE, which is subacute cutaneous LE. In it, the odds are 70-30 of having positive ANA and 70-30 for anti-Ro & anti-La. I was stubbornly sero-negative through 4 years of repeated bloodwork. And my first 5 skin biopsies came back with meaningful results that were not interpreted correctly by suburban dermies. At point of Dx, I scored a "4" on the "4 of 11" criteria, and now am a "5". (I remain very lucky because I don't have the worst of the criteria, though.)
My hair stopped falling out after I started Plaquenil. My loss was always around the hairline, though, not further back on the scalp.
Dx can take a long time in some cases. Have you seen a rheumatologist? And/or dermatologist? It was a dermatopathologist (a specialized dermie) who finally some conclusive tests on me, a specialist handpicked by my new rheumie, both from the same teaching hospital. Oddly, having a rash can HELP get conclusions drawn---it's one more thing to work with, esp. when your bloodwork is not yelling out answers.
You could browse on the phrase "ACLE rash" (acute cutaneous lupus erythematosus rash) to find articles and photos for the "butterfly" rash.
AngelicBrat put up a couple of sticky posts at the top of the board that are very good places to start to see why lupus is so complex, and ditto with diagnosis. Unlike a lot of diseases, in systemic lupus you must meet "4" of "11" criteria to be Dx'ed. So a dr. sees one or two criteria, then tests and waits. And tests and waits. There's no single test, alas---just a build-up of the number of criteria fulfilled.
Big point: the dr. SHOULD be taking your LIFELONG medical history. A lot of drs. don't "get" this fine point. Once you have a criteria checked off, as my rheumie says, it should be checked off in indelible ink.
Hope this info helps you a bit. Check back in when you can, OK? Sincerely, Vee
I'll just add my two cents. I have been diagnosed by my GP with Systemic Lupus however I am patiently awaiting a visit to a rheumatologist in October. I will have been in flare for five months at that time if this still hasn't lifted.
I have what I believe to be a butterfly or malar rash. My rash too is more of a blush and I thought that unless you knew me before I got it you wouldn't be able to tell but I've been out without makeup and more people notice than I thought including doctors. I have not yet had a rash biopsy which is one way you can know if your rash is due to autoimmunity -- however I may add that my dermatologist is very leary about biopsying my face as it will scar. I am however being treated with noritate cream topically for rosacea (another condition which causes redness over the nose and cheeks) so far I have had no response so I hope that means we're ruling rosacea out as a possibility.
When I first got my rash, it was angry and raised and felt a little burny or sensitive (like I didn't want to put lotion or makeup on my face as it seemed it might irritate it further), then it got scaly even though that's usually an oily area for me. It was like this for two days and when it arrived I also had my first case of joint swelling. Basically if my rash is very visible, my other symptoms like joint pain are a lot worse too. I also find that if I am tired, it comes out more. My rash is sensitive to sunlight but sometimes doesn't really pop out more until the next day or at least for several hours after being in the sun. I find that when my rash is "angry" that showering or bathing really seem to worsen it and the water kind of burns my cheeks and nose. Right now, I seem to have some "blush" over my nose and cheeks (sparing the folds on the sides of the nose) most of the time but have definete periods or times when it worsens or becomes more visible. Mine also gets purple and I haven't heard many other people say that but some people have said that they have a brown discoloration rather than real redness. I don't know what any books have to say about that though.
About your misdiagnosed UC, I'm very sorry for that and like Vee I feel some of your pain. I have IBS (mostly c type) that doesn't respond to anything ie. exercise, more water, more fiber, fiber supplements, aloe vera juice, medication etc.. etc... You name it, I've tried it and it didn't help me. I can't even seem to find any food triggers and especially don't notice stress triggers or emotional triggers which a lot of people w/ IBS have. Actually my symptoms seem a lot more like UC or Crohns when I got researching and it was my GI problems which brought me in to see my doctor. I too had a colonoscopy and there was no inflammation, however when I took prednisone to help bring me out of flare, I was regular for the first time in at least four years! I'm finding that IBS (if that's what it really is) is a very common thread to people with autoimmune conditions and even just immune conditions (such as fibromyalgia and chronic fatigue). Were you diagnosed with Ulcerative Colitis w/o a colonoscopy to begin with?? If so, silly doctors and I understand that too as I had a doc put me on a huge dose of thyroid meds once without ever taking a sample of blood, ended up w/ thyroiditis.
As far as the family inheritance of lupus and such diseases... I'm in agreement with Vee. But I would just add that I have been asked by any doctor (that would be four doctors in all) I see who knows about my set of symptoms and possible diagnosis of lupus---they all ask if I have a family member with it. I'm also finding though that as far as autoimmune diseases go, I don't really think there are a lot of doctors out there who really know much of anything about them.
My very best of luck to you!! I hope this was helpful and not too long. I do feel where you're coming from and I hope you get the help you need as soon as possible. Please let us know how you are doing!
Thank you Vee and Shawnee, sorry for the late reply!
Oh my gosh Vee, I can't imagine going through over 25 years of not knowing
what was wrong! When I met with my GI to discuss my biopsy results for my colonoscopy, he and my husband actually got into an argument after he
suggested that stress may be the cause of many of my symptoms. It is kind of insulting, to think you know someone that well in 20 minutes to attribute their symptoms to stress.
My experience with Prednisone has been the same as yours Shawnee. In 1998, I went to the doctor because the glands in my neck became chronically
swollen and tender. It was only when I was prescribed Prednisone for UC
that they went down. Blood tests were ran at the time with no
clinical findings. Shortly before that, I was getting bad headaches, my GP sent me for a CAT scan, did blood work....nothing. He called them "migrane headaches" and put me on a low dose of antidepressant, this seems like a common answer for everything now a days. As it turns out, those migranes are nothing compaired to what I get now.
My GI sent a referral letter to a Rheumatologist, I am waiting to hear back with an appointment date. No, I have not seen a Dermatologist. This rash I get across the bridge of my nose and checks only lasts sometimes a half an hour and never more than a couple of hours. Do all butterfly rashes last a long time? My doctor gave me cream to treat Rosacea with no success. I frequently have other rashes on my face as well.
My GI also suggested that I have IBS, which seems to wax and wane with
whatever else is going on with me.
I have a ton of new food sensitivities, my gosh! I feel like a have the flu often, infact that is how this started.
Thanks again for taking the time to write your lengthy and informative posts. I'll post an update when I see this Rhummy.
I was heartened to read about your husband stepping into the fray when the dr. suggested your symptoms were due to stress. Mine had a hard time at first questioning (challenging) what we were being told.
By the time we hit (together) the rheumie with the really bad rug [hairpiece] and the clear nail polish---we'd both had it!
I hope you have a productive & rational appt! from Vee
I, too, have lupus. My 2 cents worth is to emphasize that, with lupus and maybe other autoimmune problems, the sunshine is no longer your friend. Sun exposure intensifies not only the blush rash, it causes the joint pain and fatigue to worsen, too. If you choose to stay in the sunshine often, the blush rash can become swollen and quite apparent. As has been said, there are online photos if you do a search.
I also found that I overhearted easily - like after driving home in a hot car - and that I'd be hot and my face was beet red for almost an hour after getting home.
Get a hat with a wide brim, use a good sunscreen, and (as my rheumy said) don't plan a day at the beach. I do feel lots better all over if I comply with these easy steps.
My rheumy also said that most lupus patients have had it for 8 to 10 years before the symptoms are bothersome enough and apparent enough that they cannot be written off to flu, overwork, stress, or aging. Bummer, huh?
Wow Dad's 1st girl--
You sound so much like me in some ways! Just so you know, my rash has been generally present for quite some time now (3-4 months) but with makeup, you can't even really tell. It always worsens when I'm tired, as my other symptoms worsen, with sun exposure, and sometimes bathing or showering, but yes I have times where it is very present and that can last only a little while. I work nights and every morning before I go home, my rash looks quite intense. I go home and sleep for an hour even and wake up and it's not nearly as bad as it was.
Stress, you know that's one thing I continue to be asked whenever I see a doc regarding my IBS (if that's even what it really really is) problems and that's one thing that really sets me apart from the typical IBS patient is that my symptoms don't seem to be associated with stress, foods, or anything really but yes like you do wax and wane with everything else that is unexplained and going wrong with my body. I just know I was really shocked to get soooo much relief from prednisone in regards to my GI tract as I'd been told there was no inflammation and when that happened I just thought.... hmmmmmm???
Good luck to you, keep us posted!
lol, to funny Vee.
It isn't bad enough that we are so sick, why can't doctors just admit when they don't know something rather than insulting us by suggesting we can't manage our stress. Why not just come right out and say "I think it is all in your head" because that's what we are hearing. They are truly doing their patients an injustice by forming personal opinions rather than keeping to the medical science that they were trained to do.
Take care, no one really knows what you are going through unless they have gone through it themselves.
Everyone has given you very useful information, the only thing that I want to add is that you should be keeping a list. A list of symptoms and medical history (any illnesses) will be very helpful to your Rhuematologist.
Also it may take a while for you to get a diagnosis. Lupus mimics so many other disease that your doctor will have to do a process of elimination taking into consideration you symptoms as well as blood work.
So it may be hard and frustrating for you not knowing what it is that have, but you're going to have to be very patient. It may even help to start a daily diary of symptoms, even if it's just saying how you feel (ie. tired, depressed).
We're all here to help and share what we know through our expereinces, so don't be a stranger to the board. Take care and God bless.
BarbaraH, thank you.
Funny that you mention the sun because I cannot seem to tolerate it anymore. Beyond making my joints hurt and the rashes it actually makes me uncomfortable and irritable. I get my nails done and have to put my hands under an ultraviolet light, my knuckles immediately get beet red and hurt. I burnt badly in a tanning bed a while back (don't do that anymore) and just having the sun and warmth come through windows care can cause redness, warmth and pain.
8-10 years is a long time. Symptoms of this have come on for a period of 6 years now. I hope it doesn't take to much longer....
marmstrong, I have started to keep a daily record of symptoms. My "good days" are few and far between.
When I seen my GI, I had given him a list of symptoms. He said that he didn't want it because it only confused issues, I was really put off by that. I will do another one for my Rhuematologist, hopefully he/she will consider it a valuable tool.
It is frusterating not knowing what is causing my ill health. I was thinking about it and everytime I went to the doctor with a complaint between about 1998 to now, I had or was just going through something very emotional. It was during my Dad's battle with cancer that brought on these last things (flu-like symptoms, joint/muscle pain, hair loss, rashes etc). I will try to be patient though.
Again, thank you all for the warm welcome to the board.