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Thread: I am Also New and Don't Know Whats Going On (???!!!)

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    Default I am Also New and Don't Know Whats Going On (???!!!)

    Hi my name is John am 47 years old, live in Millbrae, California and recently my Discoid Lupus turned SLE. I was always under the impression that SLE was a womens disease and as such my denial factor took over. For the past three months I have had to take methotrexate and plaquenil and the exhaustion alone is disabling. I have been given Provigil for the fatigue but I overused this in my desire to keep pace at work. In addition to the Provigil I was given antinausea and anticramping meds which left me further fatigued.

    What I have done in the past few days is to quit taking the Provigil, and have cut down on the antinausea/anticramp meds (to counter the methotrexate). In addition I have been given a 30 day paid leave absence from work (God Love 'EM). Although my blood tests show improvement, I am most frustrated to know what happens the minute I quit taking the plaquenil and the methotrexate.

    Has anyone out there been going through similar symptoms? I am at a loss as to what to do as one doctor says that my SLE attacks the skin (major organ) and the other says it attacks my red blood cells? I mean what the eff already (forgive my Swahili). GBU All

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    Hey John, how goes it, as far as fatigue goes welcome to the club, im glad you have a very understanding employer, i couldnt even think about working right now, cant make it over two hours a day, but thats the nature of the beast

    Your not the only guy who has it in here, im 44 in sacramento and there are several others, some are real sick right now and others pop in now and again

    as far as medications go, im on different ones than you are, and you'll notice lupus affects most everyone differently, right now im having way to much fun with my kidneys etc etc etc, which leads me right into doctors, are you seeing a rhuemy???? i think your first dr is the closest to being right about sle---skin-organ invovlement, althought lupus does effect red blood cells, it is not limited to that alone(close minded drs have close minded thoughts)

    when i said welcome to the club, i wasnt tryin to be smart, I mean welcome

    there is a mens section in here where we get together and bs and the girls sneak in and check things out sometime but thats ok
    Fair Oaks California

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    Hi Teriod, Thanks tons for the reply. I have been operating pretty much solo and its great to know guys out there like yourself going through the same thing. I am sorry to hear about your kidneys and slowed days. That is really a bummer. I am trying to tack on some pounds and am currently 145 instead of the usual 165 area. I have been known to have a very positive attitude and that helps me a great deal.

    I am most interested in joining a mens forum and don't mind women joining in, anything to help you know. This 30 day leave from work has really forced me to "embrace" this situation so I am being as proactive. Coincidentally I do have a very close friend up in Sac and will make it up there soon during this leave to see him (so I say) if I have the strength. Anyway what other symptoms do you have? When were you diagnosed? What do you think may have caused your condition? Genetic? I am beginning to think that mine was contracted through skipped geneticism (if you know what I mean). Although I never met her, my paternal grandmother died mysteriously way back in the twenties and as mentioned they couldn't put a finger on it. Anyway, take it easy, I'll always be here and we'll eventually kick this thing in the rear end!!

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    Hi Juanerd;
    I see that Teroid is taking good care of you and providing you with answers and information. I just wanted to take a moment to welcome you to our family and to let you know that we are here for you to answer any questions, provide information, give you support and to let you know that you are not alone. As Teroid mentioned, there is a Men's Forum here where you guys can share with one another (and I admit, I am one of the girls who pop in once in a while :lol: )
    I just wanted to mention one or two things to you. Do be very, very careful about trying to stop your methotrexate. This drug CANNOT be simply stopped. You must wean off of it slowly. If you just stop, you can cause serious damage to those organs that the drug is trying to protect. Discuss tapering and/or dosage changes with your doctor thoroughly before doing anything. Also, as Teroid mentioned, it would be very beneficial for you to have a rheumatologist as your primary physican.
    SLE is a very different disease for each of us and it can be anywhere from mild to life threatening. Some with SLE have no internal organ involvement and then there are some who suffer greatly with multiple internal organ involvement. There is no way of predicting what any of our SLE symptoms will be or which symptoms we may or may not develop. It is frustrating, I know.
    There have been many studies done on the possibility that Lupus is genetic. It has been recently believed that Lupus is the type of disease that involves genetics and inheritence. This typ of inheritance where a disease runs in a family, but has no direct inheritance pattern, is called polygenic. This reflects the belief that the genetic susceptibility of the disease is due to multiple genes, and that a certain threshold of genetic susceptibility must be reached before an external process is capable of triggering the disease. Many of the best known examples of polygenic inheritance occurs in the rheumatic diseases (such as Lupus, Rheumatoid Arthritis etc.). The precise genes involved in the genetic susceptibility of Lupus varies from population to population, therefore, it is not surprising that the incidence of SLE varies in different populations. Also, different combinations of genes play a role in the genetic susceptibility in different populations. In the United States, the total prevalence of SLE is between 24 and 100 per 100,000 people. For Caucasian women between the ages of 15 and 64, the prevalence is one per 700 women. For African-American women between the ages of 15 and 64, the prevalence is one per 245 women; the prevalence among men, in both cases, is approximately 10-fold lower. This prevalence rate for African-American women makes SLE one of the most common chronic diseases of this population. Interestingly, SLE is felt to be rare in Africa. This suggests two possibilities: that there are environmental risk factors which are more common in the United States and Europe, compared to Africa; or that the mingling of ancestral African genes with Caucasian genes has resulted in an increased genetic susceptibility to lupus.
    In a very general way (bear in mind, these are very general statistics), African-Americans with SLE and Asians with SLE have a much more aggressive disease. There is a broad range of severity of SLE in every ethnic group, but African-Americans and Asians have significantly more active disease as a population. Hispanics with SLE are more likely to have kidney involvement or cardiac involvement than Caucasians or African-Americans; while Caucasians are more likely, as a population, to have skin involvement and platelet destruction.

    Here is a short article I found about studying the genetic invovlement in Lupus:
    "There are several ongoing studies trying to directly identify the genes involved in SLE. Generally in these types of studies, families with more than one affected member are used. Many small pieces of DNA are taken from each of the chromosomes from each family member. These pieces then are amplified (increased in number) and characterized using a method called PCR (polymerase chain reaction). Statistical analyses are then used to compare the pieces of DNA from the affected family members and the unaffected family members. The idea is that if a particular gene is involved, the affected family members should share that segment of the chromosome containing the relevant gene.
    When many families are evaluated, specific regions of the chromosome can be identified as being involved on a population basis. Doing this type of study is extremely labor-intensive but has been very revealing. More than 100 genes now are thought to be involved in the genetic susceptibility of SLE. It also is quite clear that the specific genes are indeed different in different ethnic groups.
    Some of the chromosomal regions identified in these analyses have been implicated in other autoimmune diseases such as psoriasis (a skin disease) and Crohn's disease (a gastrointestinal disorder). This suggests that some genes predispose to autoimmunity in a general way."

    I guess that all of this basically says that genes, amongst many other factors, can predispose us to being susceptible to Lupus. I suppose that when there is a definitive answer to what all of those factor are, then we might be closer to a cure. Let's hope and pray that it does happen!

    I wish you the very best and again...welcome to our family! I am not always this verbose..so forgive me :lol:

    Peace and Blessings
    Saysusie

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    Hey john, just to let you know, there are two virtual world encyclopedias on this forum about lupus, one of which has just left you a message, sayasuzie and marycain are probally the most knowlegable people about lupus that i have ever met including the drs, and there are many more that have a lot to offer also, so dont be afraid to ask!!!

    Saysuzie have you heard from marycain???


    Terry
    Fair Oaks California

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    Default Thank You Kindly!

    Hi Saysousie and Teriod,

    I can't thank you both enough for giving me more information in two days than I seemingly have received from my doctors (in laymen's terms) in the past 6 months. Saysousie, that information about methotrexate is absolutely lifealteringly, invaluable. As mentioned I quit for a week to prevent my wifes postponement of a trip to Japan and Hong Kong-had she seen me ill she would have postponed. As a consequence my sed rate skyrocketed and anemia got worse. I am beginning to wonder if 30 days away from my desk will be enough.

    As far as environmental factors are concerned, mine has been as such for the past 15 years: have spent an average of three months travelling on business to Asia, mainly Indonesia which I covered from corner to corner. I am in the business of selling our own brand (TOP-1) a synthetic motorcycle oil, "Made in USA", and although fun and rewarding, in retrospect the long hours, hot sun on my fair Irish skin, loneliness and grotty food took its toll. I swear I outdid every politician because thats what the biz was about-"kisssing hands and shaking babies" in order to grow the customer base. It hits hard at times to feel that I won't be able to travel to a hot clime area ever again. Also, I am a drummer-throughout my 20's I played professionally with a known SFO underground act called "Snakefinger". To this day I play, mainly covers and as a biz rather than an art form-I compensate for the lack of the latter by composing and still do dream, not of strdom but of writing for absolute contentment.
    We were never druggies. By that I mean, we smoked weed and drank beer and in general were the storm hippies of the 80's.

    In any case I spoke with my rheumatologist yesterday who advised that a spike in my methotrexs will be unnecessary (thank God!).

    The "denial factor" weighs very heavy also-I just cannot believe I have this condition and I am forced to take the 'trex's'. My current mind set is "great! 30 days off, I'll better my writing skills, become a better drummer and a better man for my wife and kids". Then bam~! Fatigue sets in and I am reminded. There's so much on my mind right now and the remmission phase or lack thereof drives me insane.

    What recently found hope I have lies herein this site. So now I know, don't mess with the trex's (a Godsend of a suggestion). The other biggie I have is "protein". Do I want to stay away from taking the protein drinx at 70 mg. per day? Kicking back on the couch with the tevee is unheard of but in general do I just kick back? The most embarrassing ? I have concerns smoking....what effect does this have on my condition? I have been cavalier here about this because it is such a bear to quit, so to the encyclopedics in all of you, what does this nasty habit have that exacerbates this condition? Should I retest for the ANA to see if my SLE is still there? What does a sverely stressful situation do to a system? All last week work was insanely stressful and it is so nice to be away.

    As you can tell these are all very brilliant questions, I can't believe I asked for answers to such moronistic questions?

    GBU all,
    J

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    Hi Juanerd!

    Welcome to the Forum! I'm really glad that you found us!

    Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

    Keep well!

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    Default Thank you History!

    Thanks History. It's good to know that you also love history! I like history so much I swear I have lived past lives. Kind of kidding there. I just posted and forgot to thank you personally for welcoming me.

    I will continue to post updates and to also check up on anyone.

    BTW, what meds do they have you on? If you don't mind me asking how long have you had this condition? I am just now learning to accept, and embrace with all gratitude this condition. It's the only way I'll overcome any self-pity mode. Fatigue can be pretty debilitating can't it, if not downright disabling.

    I hope you stay well.

    Hope to hear from you or anyone about my other post concerning the meds.

    Take care,
    J

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    Hi!

    I feel the same way about History! :lol:

    Well, I have been diagnosed with Sjogren's Syndrome, Fibromyalgia and Cutaneous Lupus Erythematosus (skin Lupus) so far, among many other things (Epilepsy, Asthma, Hypoglycaemia, etc., etc.). However, my doctors know that I have some type of systemic auto-immune disease, but which one, they're simply not sure. My A.N.A. is negative, so the Rheumatologist doesn't think that it's S.L.E.

    I am going to see the Neurologist on Wednesday (I have lots of neurological problems), so I'll let you know what meds she gives me then.

    At the moment, I'm on Ventolin, Inflammide Novolizer and nebulised Combivent for Asthma. I'm on Zyrtec for Allergic Rhinitis and a few allergic skin problems; I am also on Nasonex Nasal Spray twice daily for Allergic Rhinitis and because I have nasal and sinus polyps. I'm on Yasmin for an endocrine problem and for Endometriosis. I'm on Fluoxetine (20mg) and Seroquel (25mg) for Obsessive-Compulsive Disorder (I have Asperger's Syndrome as well). I'm on Differin Gel and AcneClear for Acne and Keratosis Pilaris. Lastly, I take Agiolax and occasionally, Zelnorm, for Irritable Bowel Syndrome. I use a special sunscreen for my Cutaneous Lupus, which was prescribed by my Dermatologist. I have just recently stopped taking Epilim (Sodium Valproate; other brand names - Depakene/Depakote/Convulex) for Epilepsy because it was making my hair fall out. I will let you know what the Neurologist gives me on Wednesday though.

    Keep well!

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    Hi Juanerd :lol:
    Let me attempt to answer your questions in the order that they were asked.
    First - about protein drinks and Lupus:
    Unfortunately, most trainers and bodybuilders are influenced by what they read in exercise and bodybuilding magazines. In my humble opinion, this is worse than getting nutritional information from comic books. Proteins are made up of amino acids, and help build muscles, blood, skin, hair, nails, and internal organs. There are twenty amino acids required for growth by the human body, and all but eight can be produced in an adult body. The reason we are advised to have a low-protein diet is because various amino acids seem to cause problems if in high concentrations, especially tryptophane and possibly phenylalanine and tyrosine. Many of us suffer from vitamin B6 deficiency and this may also have something to do with why these amino acids cause us problems. You should probably read the label of your protein drink to see exactly what amino acids it contains before you continue to use it. Also, we are advised against proteins found in red meats.

    Second - Here is what the Lupus Foundation of America says about Lupus and Smoking:
    "Any small benefit gleaned from cigarette smoking is far outweighed by tobacco's negative effects. The following list pairs what we know about lupus with the known effects of smoking.
    People with lupus are more susceptible to infections, with respiratory infections among the most common.
    Smoking cigarettes increases the risk of pneumococcal pneumonia and chronic bronchitis. Researchers report that passive smoking, or regular exposure to secondhand smoke, also raises the risk of having this type of pneumonia. New England Journal of Medicine 2000 Mar 9; 342(10):681-9
    Smoking or hanging around others who do may increase your risk of pneumococcal pneumonia.

    People with lupus on long-term moderate (11-40mg/day) to high (41-100mg/day) doses of prednisone have been found to develop heart disease (atherosclerosis) 20 to 30 years earlier than the general population. It's not uncommon for angina (heart muscle pain ) and even heart attacks to occur in lupus patients as young as 30 or 40 years of age.
    Smoking increases the risk of coronary artery disease.
    If you smoke and have lupus you greatly increase the risk of damaging your heart.

    Lupus can affect the blood vessels and circulation in a variety of ways. Raynaud's disease is common in people with lupus and when active, results in poor circulation to the hands and feet. Lupus vasculitis can cause narrowing of blood vessels and reduced blood flow to tissues and organs. Antiphospholipid antibodies may increase the risk of serious blood clots and stroke.
    Smoking narrows blood vessels and worsens peripheral vascular disease (poor blood supply).
    Smoking contributes to blood vessel spasms and can magnify the effect of Raynaud's making a mild case worse, and could result in severe damage to fingers and toes.
    Smoking increases the risk of stroke.

    Kidney disease in lupus can result in hypertension.
    A study at Stanford University of patients with lupus nephritis found that those who smoked progressed to end stage kidney disease far more quickly than did non-smokers (145 months vs. 273 months). Archives of Internal Medicine 1992 Oct; 152(10): 2082-8
    Smoking contributes to elevated blood pressure which increases the risk of stroke and worsening kidney disease.

    People with lupus can also develop diabetes and thereby be prone to poor wound healing.
    Smoking slows wound healing.
    Smoking increases the risk of heart attack in diabetics (insulin or non-insulin dependent).

    Avascular necrosis of bone can develop in lupus and may require surgery.
    Smoking slows recovery from illness and surgery.
    Smoking slows bone healing.

    Heartburn is found in 10 to fifty percent of people with lupus.
    Smoking has harmful effects on all parts of the digestive system, contributing to such common disorders as heartburn. National Institute of Diabetes and Digestive and Kidney Disease - Smoking and Your Digestive System.

    Many of the medications used to alleviate symptoms of lupus are broken down by the liver. Lupus can affect the liver.
    Smoking affects the liver, too, by changing the way it metabolizes drugs and alcohol. In some cases, this may influence the dose of medication necessary to treat an illness.

    Lupus can cause skin disease, which may be effectively treated with antimalarial medications.
    Smoking has been shown to interfere with the benefits of hydroxychloroquine (Plaquenil), chloroquine (Aralen), and quinacrine (Atabrine) for the skin disease of patients with SLE. Journal of Rheumatology 1998; 25:1716-1719
    A study at the University of Minnesota of patients with discoid lupus erythematosus (DLE) found that smoking was more prevalent in people with DLE compared to those with other skin diseases and those in the general population. The researchers proposed that smoking may be a risk factor for development of DLE. Cutis 1999 Apr; 63(4):231-4)
    Studies conducted at Johns Hopkins University School of Medicine have found lupus skin disease is more active in smokers than non-smokers. The Lupus Book 2000; 187

    Lupus can cause hair loss and other skin symptoms.
    Smoking has been associated with skin diseases and studies in mice indicate a link may exist between smoking and both hair loss and premature gray hair. Toxicology Letters 2000 Apr 3;114(1-3):117-123

    Medications used in the treatment of lupus: prednisone, excessive thyroid hormones, anticonvulsants, antacids containing aluminum, and heparin increase the risk for fragile bones or osteoporosis.
    Smoking magnifies the risk for osteoporosis.
    In addition, over the years research has consistently shown that cigarette smoking causes skin wrinkling that could make smokers appear prematurely old."

    Lupus and Stress:
    Stress has been associated with the onset of lupus and with Lupus Flares. How stress can initiate (precipitate) lupus is unclear. It may be that certain genetically and hormonally susceptible persons, who have been exposed to just the right amount of environmental factors, are "ripe" for stresses to trigger the onset of the illness or worsening of symptms.
    At a cellular level, stress directly affects immune, nervous, and endocrine cells, causing the production of autoantibodies, immune complexes, and pro-inflammatory cytokines. Since all of these are affected by the disease itself, stress only serves to worsen the effects on these systems.
    Many doctors have noted that patients have come to them with lupus for the first time after significant life stresses. Stress not only can cause fatigue and a general lack of well-being in healthy people, but these symptoms are exacerbated in Lupus patients. Stress can also cause a flare up (reactivation) of the lupus. This typically means that features of the lupus, including fatigue, muscle and joint aching and stiffness, fevers, and blood test abnormalities can worsen. Stress can also have indirect effects on lupus disease. Doctors who treat lupus have long accepted this concept of a relationship between stress and lupus.

    LUPUS ANA: The ANA is not an indication of Lupus by itself. 90% of Lupus patients do have an elevated ANA. But many other diseases can cause an elevated ANA. So, retaking this test by itself would not be a definate indication of disease activity. Elsewhere on these forums are discussions about what tests are run in order to determing if lupus is present and to determine the activity of the disease. If, after reading them, you still have questions about ANA, please let me know and I will do all that I can to answer them!

    I hope that I've been helpful to you

    Peace and Blessings
    Saysusie

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