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Thread: Waiting for appt....seeking your opinions

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    Default Waiting for appt....seeking your opinions

    Okay, so I'm a new member, but I have been reading some of the posts for a couple of weeks now. My family physician is sending me to a rheumatologist (sp?), but my appt. isn't until Dec. He thinks I have some sort of immune disorder, and he thinks lupus is the one. I just don't know what to think. I am a married 26 year old, with 2 boys. One is turning two this Saturday, and the other is 6 months old. I am an early childhood education major, and will be finished in Dec. 09! Here are my symptoms:

    -I have had a red rash on cheeks for a few years now, it is also slightly on my nose, but not by my mouth-I have read about the butterfly rash, but i was wondering, if that's what I have or not, because mine isn't severe looking, however anytime I don't wear makeup, my mom always asks if I feel alright and if I have a fever. It is also more prominent after being in the sun

    -body aches-this started after my son was born in April, and has progressively gotten worse-some days are worse than others-but is lupus just aches in the joints, because mine are not only in my joints-my legs, arms, neck, back, and ribs sometimes also ache.

    -I bruise easily-I always have-but it is worse now

    -I have had fibromyalgia for 8 years now, but it has never bothered me that much. My mom has it, and she has had a lot of trouble, but I just have the really tender places that throb when they are touched

    -In September, I had about 2 days where I could hardly make it through the day because I was so fatiqued, but most days I think I'm a little fatigued, but nothing severe.

    -Also, does your pain run in cycles? I've noticed that around the 10th of Sept., Oct., and now Nov., I have been super achy and not felt well for a few days around that date. Other days I just have aches and pains throughout the day, but I am still able to function

    -I read a little about Raynaud's phenomenon-my whole fingers don't turn a dark purple like the picture I saw-but anytime I'm very cold, my finger nails turn a purple color, and I have had people comment that I'm turning purple-but I don't know if this is really raynauds.

    -I don't know if this is a symptom, but I have noticed this for a few years. When I am in the sun, for even just 10 minutes, my skin turns very red, and kind of has a webbing pattern of red, and then white circular places. The redness stays for a little bit, but it really doesn't look like a rash to me. I am very fair skinned, so maybe it's just a new thing with my skin.

    -Speaking of skin, I have these raw places on my hands. I have had eczema in the past, but these places don't look like that. On these places, the skin peels off, and then it eventually heals.

    -I was prescribed sulfa medication 2 and 1/2 years ago for a staph infection, and I developed hives all over my body, from head to toe, and was told I must be allergic to them.

    -Bloodwork in Sept.-my wbc was 3.3, with a normal at 4.3
    Hemoglobin 11.1 with normal 11.5
    Hematocrit 35 with normal 34-47
    MCV 86.7 with normal 80-99
    MCH 27.4 with normal 25-34
    MCHC 31.7 with normal 32 to 36
    Platelet count 279 normal 130-400
    mean plt volume 7.6 normal 7.4-10.4
    neutrophil abs 1.49 normal 1.80-7.80

    -I definitely have foggy brain


    My great aunt died of lupus when I was young. My mom has fibro and also the kind of psoriasis that also affects your joints. My second cousin has MS.
    Everything has happened since my son was born in April-I was wondering if sometimes pregnancy can trigger lupus or other autoimmune disorders? Any input is appreciated!
    Thanks so much!
    Holly

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    Hi Holly,
    Welcome to the site. There are a lot of nice folks that come in here and they have a lot of good information.

    I don't know if a pregnancy could trigger the auto-immune disorder or not. I know that stress sure can big time. It sounds like you are sun sensitive and that would go along with Lupus. You need to write down all of your symptoms and everything that you can remember through your life when you go to the Rheumatologist. It would be great to have someone else there with you, so that you can ask questions and maybe they could be your support system. I hope that you get some answers when you see the Rheumatologist. Please keep posting ok.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Hi Holly and welcome to the site

    I'm not diagnosed as yet. My mother had lupus and my sister has it. I've had symptoms since I was 19 yrs old. So far I've had one positive ANA test plus a boarderline and a negative.

    I have psoriac arthritis, which from my understanding can be linked to auto immune disorders, lupus and rheumatiod arthritis.

    My sister did not show any signs of lupus until her first pregnacey, but I think lupus rears it's ugly head when ever it pleases.

    From what I've heard others say it seems that lupus is triggered by chemical changes in the body, stress, illness. There are many things that can aggrivate lupus ... for example sunlight and stress.

    There are a lot of symptoms that some people take as just being a querky thing that happens to them alone. Untill you meet up with others with lupus who have the same querky thing.

    Untill I cam to this board, I have NEVER met another sole who's palms broke out in small itchy water blisters. I was relieved to find others who suffer from this. :lol: Missery loves company.

    Before your appointment, take some time and right down key points you want to make your doctor aware of....tiredness, rashes, joint pain, family medical history and so on. Once you are in with the doctor, it's easy to forget things that you ment to ask.

    Do not be afraid to ask your doctor to explain anything you are not understanding. They tend to forget that this is all new to us, and we don't know the terms or understand what the heck they are talking about.

    Symptoms of lupus vary from person to person. Some people here will identfy with one set of your symptoms but not other ones.

    Glad you found us, let us know how you make out with your appointment. Feel free to ask anything you wont. There's alot of wonderfully informed folks that run this site or who are regular members.
    Oh look ... a cookie

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    Hi Holly;
    Welcome to our family. Almost all of us with Lupus are allergic to Sulfa medications. I found out the same way that you did. It is a "no-no" to a vast majority of us.
    Also, Lupus patients are extremely sensitive to the sun and we must, at all costs, avoid sun exposure. Many symptoms are exactly as those you've described. Sun Screen (minimum SPF 35), long sleeves, hats, sunglasses....these are our standard garbs when we must be exposed to the sun.
    I, too, have Fibromyalgia and it is not uncommon to have it as an overlap disease with Lupus. It is difficult, at times, to discern what symptoms are FM and what symptoms are Lupus. Lupus causes inflammation throughout the body (joints, muscles, organs, tissues), so it stands to reason that every part of the body can experience some type of pain. Fibromyalgia causes widespread pain also, but it does not affect the joints. FM mostly affects the muscles. So, your pain could be a combination of both diseases (much like mine).
    There is no conclusive research regarding Pregnancy triggering Lupus. As Kathy mentioned, stress can play a large part in activating Lupus. Researchers have found that the hormone prolactin, which rises during pregnancy, is associated with lupus activity during and after pregnancy. Likely other hormonal influences, especially estrogen, changes in cytokines are involved as well. The cyclic nature of your Lupus may be related to hormonal influences also.
    Lupus is a very frustrating disease and it affects each of us differently. So, our treatments are as different as our symptoms. However, it is important that you are treated for your symptoms. We are here to help you understand this disease, its treatments, its medications and how it affects you. As you can see from the posts in these forums, you are not alone. :lol:
    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Thank you all very much for the info! I found the prolactin info. interesting, because in 2006, I found out that my prolactin levels were very high, and I had to have an MRI to make sure there was not a tumor on my pituitary gland. There was no tumor, but the high prolactin levels were preventing me from becoming pregnant, so they put me on bromocriptin(sp?). The prolactin level continued to be an issue after Tucker was born also. I had no idea prolactin had anything to do with lupus!

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    This information about Prolactin was not known 20 yrs ago. Continued research about Lupus lead to the discovery of this relationship between Proclatin and Lupus. More and more information is being discovered about our disease and, as such, successful pregnancies have become the norm instead of the exception. However, Lupus pregnancies are still considered HIGH RISK only in that expectant mothers must be monitored very closely during the entire pregnancy, both by their OB and their rheumatologist. If you OB was not aware of your Lupus or did not know about Lupus, this may have had some effect on why your Lupus exacerbated during or after pregnancy.

    Do talk to your current doctor about adding a treatment to you Plaquenil so that you can get faster relief from your symptoms.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Hi Holly and Welomce!

    My niece developed lupus after her third pregnancy. She was on a few of the lupus meds for a while and happily went into remission where she has remained for the past several years. There definitely seems to be some sort of link between autoimmune diseases and female hormones, which may explain why so many more women than men get these diseases. Your rheumy will do more specific tests to try and pin down what's going on, but be warned that lupus is tricky to diagnose. No matter, if it's determined that you have any autoimmune disease, many of them are treated the same way. I hope it turns out that you have none of them, but if you do, there are medications that can get you to feeling better. Let us know how you make out.
    SLE, SJS, vasculitic neuropathy, Degenerative Disc Disease, Chronic Autoimmune Urticaria

    Plaquenil, Imuran

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