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    Old 05-13-2013, 05:59 PM   #1
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    Unhappy Lupus and menstrual cycles?

    Hi all! I'm new to the board, but have a lot of questions. After reading several stories here, there are many eerie similarities present, so I would appreciate any insight or suggestions you all may have. Sorry this is so long-- there's just a lot going on!

    My family has a very varied history of autoimmune diseases, especially in the women, and mostly skin-related. Breast cancer and thyroid disease (hypo and hyper), diabetes...all sorts of lovely things.

    Although not a sickly child, per say, I was sick probably more than most. When I was younger, my mother took me to the doctor because I had a rash in the folds of my skin, where I sweated (arm creases, armpits, legs at knee especially). The doctors said it was nummular eczema, gave my mom a lotion, and it went away. By the time I was ten, I never had any rashes. Other than bronchitis or seasonal allergies, I never had any real problems. My aunt on my mother's side was diagnosed with SLE and although not given a good prognosis initially, it is pretty much gone after years of medicating it. My mother was diagnosed with lichen sclerosis and granuloma annulare in the past few years. And as far as grandparents and great-grandparents go, they had all sorts of stuff. Although much of what I have read claims that there is no proof that autoimmune disorders are genetic, I would beg to differ!

    My issues started popping up in my early twenties. First I was mildly allergic to cherries (which I loved and ate by the pound!), and then it progressively became most fruits, some vegetables, and some weird things (avocado and almonds, for instance.) Then it became cut grass (which would break me out in a hive-like rash for about 3 days), mold, and smoke. The reaction is usually mild, usually involving sores popping up on the sides of my lips or inside of my mouth and an unsettling feeling like my throat is tight. If a bee stings me now, though, my new reaction is to have a swollen arm (or leg) for three weeks. Fun stuff. Bug bites in general are a major irritant these days. My weight has fluctuated like crazy over the past few years or so. I can gain and lose fifteen pounds easily without any real changes to my diet or habits. I went from 140 down to 110 and now I'm back up to 130. Other than generally feeling fatigued, though, by twenty-four I still felt like I was generally healthy.

    Around the time I turned twenty-five, I became extremely ill out of nowhere. After about 4 months of feeling like I was dying and going to the doctor only for them to send me home saying I just had a cold, I finally was referred to a general practitioner who gave me a blood test. Come to find out, I had whooping cough and walking pneumonia! I was then sent to an ear, nose, and throat specialist because of the immense amount of coughing I was still doing who found that I have chronic sinus issues on top of that (polyps!). I had an extremely persistent dry cough for about eight months which resulted in several fractured ribs. My bloodwork itself, was very good otherwise with a strong immune system, so I was surprised by all of this. I have always had dry eyes, but my skin and hair has substantially become more brittle, thinner, and drier, despite moisturizers, a good diet, vitamins, and exercise.

    I seemed to be improving other than feeling tired all of the time. No matter how much sleep I had, I was exhausted. In the summer before I turned twenty-seven, I began experiencing dizzy spells, some of which that would lay me out for an hour or two. I never passed out, but my hearing would fluctuate and I would feel like the room was spinning. I would lay down after the dizziness subsided and would be dead to the world for at least 30 minutes or so. I was diagnosed with vertigo. I also began getting sores around my mouth or inside my mouth. They were small and would only last a few days and then disappear entirely. Then the headaches started, mainly around my menstrual cycle. These, like the vertigo, left me exhausted, often because they were so painful that I couldn't sleep. These lasted a few months and then they went away. I then had what the doctors thought was west nile virus, and for weeks had very bad fevers and a rash, but it went away. My doctor, with all this, suspected that I may have lupus, but none of my tests came out positive. They did x-rays of my lungs and I have interstitial markings, but he's not sure if that is from lupus or from when I had the whooping cough because I also have scar tissue from that, which sometimes makes it difficult to breathe normally.

    About five months ago, my lower right arm started itching. It was a small patch of hive-like bumps, which resembled bug bites (like scabies). Next this rash turned into ring-like dime-size patches (with clear centers), and then it became large, red, burning scaley patches from hell (especially if water or sweat hits them!). It started on my lower arm and ended up on both arms, my neck, my upper back, and on the sides of my face. There were even a few tiny spots on my upper thighs and hips, but thus far it hasn't spread anywhere else. It will go away for a couple days, and then just when I think it is over with, will come back with a vengeance! My mom thought I was allergic to my new boyfriend (poor guy!) and I thought I'd somehow gotten some allergy or virus. My doctor thought it was tinnea, then referred me to a dermatologist who said it was nummular eczema as soon as he walked in the door from about ten feet away, then admitted it MIGHT be autoimmune and hit me up for a biopsy. He said it may or may not help diagnose it so they may need to do a couple biopsies ($$$$), which didn't make me feel too keen on getting multiple holes punched in my skin without a definitive result. But that probably would feel better than this extremely painful, itchy, burning sensation that happens all the time now. They gave me a steroid injection and a topical steroid. The first two days I was on cloud nine-- and then it came back twice as bad as it was. I have changed every detergent or perfume (I even sprayed on my boyfriend's cologne to make sure that wasn't it!) and even my diet, so we've pretty much ruled out allergies unless I am allergic to water now.

    That was in January. It is now mid-May and the rash was so bad that I had to go to my regular doctor again (to get a referral) because this rash was in ultimate flare-up mode. We did more blood tests (I passed out-- vasovagal here! of course! But they said my rash looked great when all the color drained out of my skin! ha!) and my ANA, Sed rate, and C-reactive looked good. So now I'm not at all sure what to do. My doctor said he could refer me to an allergist, a rheumatologist, or another dermatologist. I realize a lot of you have been through similar trials-- is bypassing the others and going to a rheumatologist more beneficial? I am a college student and don't have a ton of money to spend on biopsies and lots of testing, but I also want to get better as soon as possible. My doctor is even fairly convinced that I have a connective tissue disease-- we just aren't getting any positives so he can't prescribe me anything that might help other than prednisone and topical creams. My mom suspects I have SCLE or some variant of that, since I have other lupus-like symptoms (I also experienced hair loss last year for a few months.) Has anyone had any similar problems? Every symptom I have had is exponentially worse around my menstrual cycle and ovulation, too-- is this normal for autoimmune diseases? Thank you so much for your time.

    Last edited by asocialceleb; 05-13-2013 at 06:02 PM.

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    Old 05-14-2013, 12:55 AM   #2
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    Re: Lupus and menstrual cycles?

    Hi & welcome. I'm sorry you're struggling, and with multiple problems. Not fun! I'm only a patient, so please read this accordingly, OK?

    It took me years to get a rash diagnosis. Mine was SCLE, the annular form. My lesions didn't itch or burn, but I think that the literature suggests that they sometimes can. My final dermatologist was by far the best b/c---
    1. He's both a dermatologist & pathologist, so he does his own labwork. Such double-specialists are probably rare & more often found at teaching hospitals.
    2. He was handpicked by my rheumatologist.
    3. My earlier derms (many) only had my punches examined microscopically. They omitted a critical Step 2, immunofluorescent stain tests that look for telltale linear bands to fluoresce. These bands are considered virtually diagnostic of lupus. These stains can light up "immune junk" that's been deposited between dermal/epidermal layers. My derm/path used "Alcian" stain, but that was years ago. BTW, the test is called a "lupus band test".

    People with the SCLE rashes can meet fewer than 4, 4, or more than 4 criteria. Anti-Ro is the ANA subtype most often found. However, the more general ANA test can remain negative in about 1/3 of patients with SCLE rashes---which, in lupus overall, translates to approx 3-5% of all people with lupus [so I was told, anyway]. The SCLE rashes can also occur in people with Sjogren's syndrome, or some (genetically-caused) complement deficiency.

    As I said, I'm no doctor, but other things you wrote caught my eye:

    Re: steroids quelling your rash. They didn't quell mine. I was eventually told that SCLE rashes are notoriously steroid-resistant.

    Re: rash triggers and cycles. For me, a new batch usually recurred every 3-4 months, except at the end when new lesions appeared before old had faded. Sun exposure was definitely my trigger, but that only became clear to me over time. (I didn't suspect sun b/c it hadn't bothered me prior, which sounds stupid on my part, but lupus wasn't on my radar or on that of my local drs.)

    Re: (possible) oral ulcerations, fatigue, hair thinning, wild reaction to bug bites, and premenstrual exacerbation. Ditto for me.

    Re: your labs. Per above, there's a possibility, albeit low odds, that you're ANA-negative but positive for anti-Ro. Did you get copies of your labs? (You should always get copies, esp. while in diagnostic limbo.) Because of this possibility, doctors should run the ANA subtypes *simultaneously* with ANA, instead of waiting for a positive ANA and only then testing for the subtypes.

    Re: annular rashes & rashes in general. For sure, there are other annulars that aren't lupus rashes; I know b/c one of my derms (not a very helpful one) kindly provided me with articles & pics of about 10 other ones, none of which were lupus-specific. And overall? I once read there are something like 17,000 skin conditions... or some horrible # like that. Therefore in your shoes, I'd aim high, say a teaching hospital, if possible.

    Unfortunately only doctors can say whether you have any AI, or lupus, or SCLE rashes. But here's something interesting: I was surprised to learn from reading the boards that rashes are seen in *multiple* AI's, not just lupus, such as Hashimoto's thyroiditis, Celiac, Crohn's, etc. You didn't mention any GI symptoms... But, for sure, thinning hair, weight fluctuation, and fatigue would make me seek *thryoid function* tests, too.

    I feel for you! I hope others add more & that you post more soon. Bye for now, with my best wishes, Vee

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