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Thread: New member, not new to Lupus

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    Default New member, not new to Lupus

    Hi! My name is Susan. I've been formally diagnosed with Lupus for 4 years, but have suffered from it for years (along with Crohn's Disease - double whammy). I never tried a support group or forum like this, but I really should have. I have read many of the postings in many of the topics, and I would love to have come here sooner (you guys are awesome support to each other). I struggle with many of the things you discuss (rashes, profound fatigue, pain), but I have also developed osteoporosis from the prednisone and methotrexate, and as a result have had 8 fractures in the hip and pelvic areas in the last 3 years. I wonder if any of you have heard of this happening? It is difficult to get out at all, and I was already new to the area when I got so sick. So, I have few friends, and I have been unable to work for 4 years. Depression was inevitable. I should have come to you sooner to give myself the support I desperately needed (need!). Gosh! I'm glad you are here!

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    Welcome Suzique,

    I am sorry you have been through so much. Are you currently taking anything for the osteoporosis? Fosomax is RX that can be written by your doctor and helps. It sounds like you fit in perfectly with our family. I have not heard about hips and pelvic fractures; but everyone is different.

    You really need support and that is what we are all here for. We try to help or make suggestions while being supportive. It also helps when you are living through Lupus and many of the accompanying health issues, and do not know what to expect day to day.

    I know someone else on the forum will jump in and answer your question about fractures; probably Saysusie. Welcome again, and I hope you are not feeling so alone anymore.

    Take care,

    Faith 8)

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    Default Osteoporosis

    Faith, regarding the question of whether or not I am on Fosamax for the osteoporosis: actually I was for two years (Actonel), but I continued to fracture and the funny thing was, my Dexa was pretty normal. Finally, a special specialist (haha) told me that I have "Bone Demineralization Osteoporosis", which causes the bones to be fragile and no longer hard, rather than thin them. It is weird. I took an IV treatment of Zoledronic Acid for it, but that takes months to become absorbed and re-harden the bones (if it works). I have just never talked with any other people with this kind of problem, and I wondered if anyone there had. No big deal, we all have our bizarre little quirks that we bring to the forum, it looks like - haha - but wondered.

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    Hi Suzique,

    Sorry to hear all that you have. I am new to lupus but not really new to the symptoms as they have been going on for a long time. At the moment, I am in a flare, and I am having a hard time getting out of bed.

    I have never broken my hip but I did brake my foot this last summer. It was because of that break that ultimately led to my diagnosis. In a round about way. Weird, huh. I seem to have gotten so clumsy and stepped of of a stem and my foot broke. The doc wants me to go for a bone scan.

    Well, welcome to the forum.

    I Him

    Karen

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    I have no personal experience with osteoporosis. But, I just wanted to provide some information about the use of glucocorticoids (Methotrexate) and its link to Osteoporosis:
    High doses or prolonged use of Methotrexate can cause Osteoporosis. If you are taking 10 or more milligrams per day of prednisone, Methotrexate or another steroid for more than three months, your doctor should have prescribed 1,500 mg of calcium, 400 i.u. of vitamin D to take daily to prevent osteoporosis.
    Since you have osteoporosis with your Lupus and are continuing to take Prednisone and/or Methotrexate, then your doctor should prescribe osteoporosis drugs to try to prevent further progession.
    Osteonecrosis (bone thinning and fragility) is an unfortunate complication of SLE or glucocorticoid (Methotrexate) use. Osteonecrosis most often affects young adults aged 3050 years and, if the hip is involved, total joint replacement is commonly required. Osteoporosis is defined as a reduction in bone strength by becoming fragile or thin. This reduction leads to bone fractures, even when very low forces are applied.
    Individuals achieve peak bone mass about the age of 20 years. After peak bone mass is achieved, bones are constantly remodeled through a tightly coupled process of bone resorption followed by formation. This type of coupled remodeling of the skeleton continues until women become menopausal, at which time reduced levels of estrogen and increased levels of follicle-stimulating hormone stimulate accelerated bone remodeling, and gradual bone loss occurs. In men, age-related bone loss occurs in the eighth decade of life. By the age of 75 years, women have lost nearly 30% of their bone mass and nearly one in two women will have osteoporosis and consequently a high risk of fracture.
    Bone remodeling is a tightly orchestrated process in which osteoclasts (cells that resorb bone) attach to the bone surface and remove bone. After a resorption pit is formed, osteoblasts (bone-forming cells) migrate into it and produce new bone, referred to as osteoid, which then mineralizes. Under normal circumstances, the exact amount of bone that is removed is replaced. Physiologic states that are associated with high levels of osteoclast activity or low levels of osteoblast activity can, however, uncouple this process and bone loss can occur.
    SLE patients have lower bone mass in the lumbar spine than persons of similar age who do not have Lupus. Patients with SLE also have a significantly higher risk of vertebral fractures. The majority of these fractures occur in premenopausal women with Lupus. Some of the traditional risk factors for osteopenia and fractures in the majority population are present in SLE patients.
    Risk factors for osteoporosis in SLE patients include the use of glucocorticoids, and it has been found that long term use of glucocorticoids was a strong predictor of fractures. In addition, cyclophosphamide have been found to reduce bone mass, by altering estrogen and the follicle-stimulating hormone levels.

    In Summary, according to The Lupus Foundation of America:
    Systemic and localized inflammation caused by Lupus results in elevated levels of cytokines and proteins that alter bone remodeling and increase bone loss. Tumor necrosis factor, interleukin 6, oxidized low-density lipoprotein (a substrate for lipoprotein lipase and RANKL all either increase osteoclast-driven bone resorption or reduce osteoblast-driven bone formation. In addition, the traditional osteoporosis risk factors are also relevant in patients with SLE (e.g. age, weight, history of smoking, peak bone mass, history of fracture as an adult, and family history of fracture). There are metabolic conditions associated with SLE that can also increase the risk of osteoporosis: low serum vitamin D levels, low thyroid activity and, possibly, a high homocysteine level. Lastly, to reduce their disease activity, patients with SLE are treated with medications that can have adverse effects on bone strength (i.e. glucocorticoids, cyclophosphamide and GnRH agonists). Abbreviations: CRP, C-reactive protein; GnRH, gonadotropin-releasing hormone; IL, interleukin; RANKL, receptor activator of nuclear factor B ligand; SLE, systemic lupus erythematosus; TNF, tumor necrosis factor.

    I hope this information has been helpful.
    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Default Osteoporosis

    SaySusie, yes, I have been on Calcium, Vitamin D, Magnesium, Folic Acid, and Actonel, almost from the first day of diagnosis. Funny thing, Karen, my first fracture was my foot, too. I was actually still quite active, although having fatigue, joint pains, fevers, rashes, and mouth sores. My ANA was positive for Lupus, and my C-Reactive Protein was very high. Despite all of this, it took 3 years of severe symptoms and three Rheumys to finally get the proper diagnosis! By then, I suppose a lot of damage had been done. I have yet to understand why they find such difficulty seeing what is so plain! According to what I have learned, there are 7 major symptom groups that distinctly describe Lupus, and it only takes having 4 of them to qualify as a diagnosis. I had 6 for years! I tell this to offer reassurance to those still struggling with symptoms but no diagnosis. As said by so many others, I was not GLAD to have Lupus, but I was relieved to finally have acknowledgement that my symptoms were true and for a reason - not in my head.
    Another odd symptom that I have frequently with flares, that I have not seen mentioned, is sores on the hands - mostly finger tips - supposedly from the compromised circulation. They are very deep and very painful, sometimes downright intolerable, and they take a long time to heal. I have been to dermatologists and have tried every lotion on the market (by prescription, even) to cope with them. The most soothing thing I have found is these mineral oil gel finger covers that hug my fingers like little gloves. It feels good, but does interfere with typing!
    My heart goes out to all of you going through a bad time, as I have felt that way myself. At least you have found (and now, so have I!) a place to verbalize your frustration and pain to sympathetic ears (eyes?).
    God Bless you all!

    Susan

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    Hi again, Susan,

    It sounds like you have Reynauds syndrome, too. My fingers turn white then deep red when they are cold as well as my toes. Do you get sores on your toes, I do.? You really need to wear mittens, of course you already know that, I am sure.

    You have had so many hip fractures, did you fall? I have had quite a few falls and in publc (embarrassing) since summer. ops: but no more breaks.

    Have a great day,

    Karen

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    Default Falls from weakness

    Karen,
    Yes, the breaks occurred with falls. Nothing major, mind you. Just legs gave out on me, and I crumpled to the ground. Once right on the sidewalk by the hospital where I was working. Leg bleeding wildly, and not one person stopped to offer help. Terrible how cold people can be. I use an assistive device, at least a cane, now, but still manage to fall, usually in my house where I think I'm invinceable - LOL. Did you ever have the bone scan? Some of the positions they put me in were quite uncomfortable - you might want to take whatever pain med you have prior to going, just in case they do the same kind of maneuvers with you.
    Yes, I get the sores on my toes, too. I wear thick socks and slippers all year round and avoid temperature extremes. No playing in the snow
    Yes, it is due to Raynaud's. I take two meds for that. I seriously have a pharmacy now! LOL.

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    Hey Susan,

    I havnot had the bone scan, yet, but thanks for the advise. I have been battling dizziness on again and off again for a month. It seems that when I have an appt for anything that I am not able to drive. My husband can't miss work for it, either.
    I had a similar exerience as you when I broke my foot. I did it in a mall. I was beyond exhausted and was still pushing myself. (This was before diagnosis and I was sure that the tired problems were all in my head and I was just lazy.) So I kept going. I stepped off the bottom step and it must have been hard, because I ended up falling to the ground because of the pain in my foot. There was noone to help. At least I was not bleeding. So I tried to "walk it off" and nearly fainted so that is when I realized that it was broken. I walked all the way through the mall, praying all of the way, to my car. then drove myself to the emergency.

    Oh well..I survived...

    Btw. I read that you moved from Texas. Where did you live in Texas? If I could move out of state, then it would be to Colorado. It is so pretty there. Of course I am just dreaming. I don't know if I could handle the cold any better than the hot, anyway. It has just gotten cold here, (at least what we call cold) and I am not handling it very well.

    Well, have a nice day,

    Karen

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    Default Cold Weather

    Karen,
    Lived in Arlington, between Dallas and Fort Worth for 14 years. Loved many things about it (friendly people, slower pace), but the heat from April to November was unbearable. Much better here (Seattle area), because it is actually quite temperate. Extremely cold days are really not many, and the hottest days are in the 80's, pretty much. On those freezing level days, I either don't go out at all, or I bundle up with lots of layers. Works for me.
    Have you seen an ENT about the dizziness? I have chronic sinusitis (another inflammatory thing that Lupus can cause or worsen), and that causes pressure and dizziness a lot. It never bothered me excessively, until the Lupus got out of control, but now I have huge, dark circles under my eyes. Ugh! This adds to the general tiredness, too. They have lots of "natural" recommendations to help with those symptoms, if that is what is happening with you.
    Also, have you considered having your husband obtain a Emergency Medical Leave form from work and having your doctor sign? We have one, and it basically states that I have a chronic, ongoing disease that occasionally debilitates me to the point of requiring assistance with getting me to the doctor, helping me with ADL's (activities of daily living) such as meals and getting cleaned up, etc., and ensuring my safety (due to the falls). They have to estimate the amount of time each year that might be necessary, which is really impossible with Lupus, but my doc just uses a range like this: 6-8 episodes per year, lasting 1-3 days each. We fill out the majority of the form, and he signs it each year. That way, when my husband has to take off to take me to the doctor, hospital, or just take care of me 1 or 2 days, if he specifies on his time form it is time to assist his wife, the company cannot count that time off against him for evaluating his performance. He has to use his personal time off to get paid, of course, but they cannot say he takes off too much - law protects him from that. It has worked well for us. He hates to take off, always feels he is letting his co-workers down, but he knows I wouldn't ask, if I didn't really need him. Something to think about, anyway.
    So very nice to "talk" with you. Hope things get better for you.

    Susan

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