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Thread: Diagnosed with Lupus in 06

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    Default Diagnosed with Lupus in 06

    Hi my name is Dona. I currently was diagnosed it Lupus Nephritis in Aug 06. I live in Boston, MA and have 3 kids, ages 4, 3, and 2 year olds. I'm also married we just bought our new home back in Oct 2007.
    My situation is kinda hard to deal with right now, as for my SLE, its been under control so far, but it was harder back when I first started dealing with Lupus, I had fluid on my lungs every 2 weeks until I had it removed. Then I always had a huge amount of protien in my urine, to where I was on Chemotherapy, Cytoxan to help with what everything was going on. It did help out so much, I'm glad with the newer drugs out it helps out so much.
    Now my new situation is having Avascular Necrosis of the hips, and its because of higher doses of steroids, Prednisone. I've been on high doses at much as 60mg, down to 10 mg right now. I'm hoping that I can get through this because I'm seeing a Orthopedic surgeron about having 2 hip replacements because of this, I think in some ways its because of lupus as well.
    Lupus is still all new to me, and I'm always learning new things about it. I go to one of the top 3 hospitals in the country, so I know I'll be getting good care there.
    If I could get any more information or anything else, I would love to find out more.
    Thank you,
    Dona

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    Hi Dona,

    Welcome to the forum. I am pretty new here, but have had Lupus most of my life. I did not get diagnosed until I was 36 years old though, because in my case the Lupus progressed rather slowly and did not get bad until after I got the chickenpox. I fortunatley have never had it attack my kidneys, but it did attack my heart muscle is how I got diagnosed. I never had the fluid around the lungs or the heart. I have had the Costal Chondritis and things like that. As you know Lupus affects everyone differently and it is the most mind boggling thing you can deal with. There will be others that come in here that can give you better answers. Saysusie is great and so is Rob and a few others. Welcome to the forum and god bless.

    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 Dona!
    Welcome to the forum - its truly a wonderful and safe place for us lupies! Where in Boston do you live?? I am from Quincy!! Wow - small world - weve probably been to all the same docs - lol!
    Again, welcome, and I look forward to getting to know you!!
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    Hi Dona :lol:
    Welcome to our family. We will be more than happy to help you learn as much as you can about Lupus, its symptoms, its treatments, its medications, and how to manage your lupus. Everyone here is understanding, supportive, comforting, and informative. I'm glad that you joined us :lol:
    Avascular Necrosis occurs when the blood supply to a bone diminishes, often leading to tiny breaks in the bone and eventually to the bone's collapse. The hip joint is commonly affected (the ends of the bone (epiphysis) of the femur, the bone extending from the knee joint to the hip joint), although avascular necrosis can occur in other bones as well. Avascular necrosis can be caused by lupus itself or by high doses of corticosteroids used to treat the disease.
    Avascular Necrosis is also known as Osteonecrosis, aseptic necrosis, and ischemic necrosis. Other common sites affected include the upper arm bone, knees, shoulders, and ankles. The disease may affect just one bone, more than one bone at the same time, or more than one bone at different times. According to the American Academy of Orthopaedic Surgeons, 10,000 to 20,000 people develop osteonecrosis each year, and most of them are between 20 and 50 years of age. Osteonecrosis is the underlying diagnosis in approximately 10 percent of hip replacements.
    The amount of disability that results from osteonecrosis depends on what part of the bone is affected, how large an area is involved, and how effectively the bone rebuilds itself. Normally, bone continuously breaks down and rebuilds - old bone is replaced with new bone. This process - which takes place after an injury as well as during normal growth - keeps the skeleton strong and helps it to maintain a balance of minerals. In the course of osteonecrosis, however, the healing process is usually ineffective and the bone tissues break down faster than the body can repair them. If left untreated, the disease progresses, the bone collapses, and the joint surface breaks down, leading to pain and arthritis.
    Aside from injury, one of the most common causes of osteonecrosis is the use of corticosteroid medications such as prednisone. Corticosteroids are commonly used to treat inflammatory diseases such as systemic lupus erythematosus. Doctors are not sure exactly why the use of corticosteroids sometimes leads to osteonecrosis. They speculate that the drugs may interfere with the body's ability to break down fatty substances called lipids. These substances then build up in and clog the blood vessels, causing them to narrow and to reduce the amount of blood that gets to the bone. Some studies suggest that corticosteroid-related osteonecrosis is more severe and more likely to affect both hips (when occurring in the hip) than osteonecrosis resulting from other causes.
    Total hip replacement is an option for nearly all patients with diseases of the hip that cause chronic discomfort and significant functional impairment. Most patients have an excellent prognosis for long-term improvement in symptoms and physical function. Currently, a cemented femoral component using modern cementing techniques, paired with a porous-coated acetabular ( the cup-shaped socket of the hip joint which is a key feature of the pelvis. The head (upper end) of the femur (the thighbone) fits into the acetabulum and articulates with it, forming a ball-and-socket joint) component, has been found to give excellent long-term results. Revision of a total hip replacement is indicated when mechanical failure occurs. Continued periodic follow-up is necessary to identify early evidence of impending failure so as to permit remedial action before a catastrophic event.
    Hip replacement procedures are done in three techniques; cemented, uncemented and hybrid fixation technique:

    Cemented (aka: Acrylic with Cement Fixation):
    Artificial joints date back to the 1800's when surgeons used prostheses of various materials, one being an all metal hip with metal screws. There were problems with erosion and loosening however. In the 1960's a British orthopedic surgeon Sir John Charnley developed a prosthesis made of high density polyethylene. The prosthesis was held in place with methylmethacrylate cement. Now, the surgery is basically the same. During the surgery, the acetabular component of the hip is replaced by a cup made of polyethylene. The femoral head of the thigh bone is replaced by a metal ball attached to a stem. How the femoral stem is secured into the thigh bone is now an option for surgeons. Over time (10 to 15 years) the cement will erode and need to be replaced. The recovery time for this prosthesis is faster than other methods.

    Cementless Design
    Cement had traditionally been used but in the 1980's a cementless design was developed. The difference between the cement and uncemented version of the hip prosthesis is the lattice grid that comprises the socket part of the uncemented prosthesis. The cementless design is a porous implant. The intent is, through biologic fixation, that bone grows into and through the pores in the implant, thereby securing it.
    In theory the cementless joint replacements are expected to reduce the chance of infection and loosening of the prosthesis, which are the two major complications of hip replacement surgery. Recent research, however, indicates that both the cemented and cementless joints do very well.
    The problem of loosening is the focus of current research. Some researchers feel the way the bone is prepared or where the bone contacts the cement may be the problem and cause a breakdown. Other researchers believe that as cement flakes into microscopic particles it creates an inflammatory response in the body which leads to bone loss where bone meets cement. Yet another problem may involve the wearing down of the plastic liner.
    In spite of potential loosening, the patient can expect many years of excellent results before a problem possibly occurs. 90% or more of patients having hip replacement surgery experience significant pain relief and improved range of motion. The surgery is considered highly successful.

    Hybrid Fixation Technique:
    Now days, joint implant technology is constantly improving, enabling the artificial joint to last longer. The hybrid fixation is where one part of the hip prosthesis (generally the stem) is cemented together while the other part of the hip (generally the socket) is inserted without cement.
    Scientists are now working on using ceramics and coral to be used as joint replacements in the future. Hospital stay after surgery usually lasts for five days. After the hospital stay, you will probably require the aid of a walker for a few days before putting full weight on the leg.

    Aftercare;
    On the first post operative day of your surgery, bed rest will be advised with your legs abducted to prevent dislocation. However, mobilization out of bed depends on your Surgeon and may start on first day. Bed exercises such as quadriceps contraction and ankle exercises will be encouraged for enhanced circulation.
    Routine chest physiotherapy will be given to prevent any chest complications. On the second day after the operation, you may be required to walk to the bathroom, with the help of a walker. You will gradually be ambulated to walk with crutches, and will be taught special maneuvers to help you with daily activities, like climbing stairs.
    Following hip operations, a catheter remains in for two days and you will probably be told to use bedpan for elimination needs.
    From the second day after the operation, you probably will not require the catheter or the bedpan. The nurse will examine the bandage and apply a new dressing.
    On the third post operation day, a hip X-ray will be taken and reviewed by the surgeon. Patients are usually discharged on the forth to fifth day after the operation. The use of crutches or a walker may be necessary for as long as 3 months, although most people who did not use them before are able to walk without them in several weeks.
    Full recovery from the surgery takes about 3 to 6 months, depending on the type of surgery, your overall health, and the success of your rehabilitation. Hip replacement is one of the most successful orthopaedic surgeries performed. Studies have shown that more than 90 percent of people who have hip replacement surgery will never need to replace an artificial joint. However, because more people are having hip replacements at a younger age, and wearing away of the joint surface becomes a problem after 15 to 20 years, replacement of an artificial joint, which is also known as revision surgery, is becoming more common. It is more difficult than first-time hip replacement surgery, and the outcome is generally not as good, so it is important to explore all available options before having additional surgery.
    Doctors will consider revision surgery for two reasons: 1) if medication and lifestyle changes do not relieve your pain or your disability,
    or 2) if X-rays of the hip show damage to the bone, around the artificial hip, that must be corrected before it is too late for a successful revision. This surgery is usually considered only when bone loss, wearing of the joint surfaces, or joint loosening shows up on an X-ray. Other possible reasons for revision surgery include fracture, dislocation of the artificial parts, and infection.

    I am sure that your doctor and your surgeon will go over all of this with you again. I wanted to make sure that you had information about the surgery so that you will be able to make an informed decision with your doctors. I hope that this was helpful. Please let me know if you need anything more :lol:

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

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    Hi Dona and welcome,

    I've had Lupus for 26 years and have had both of my hips replaced due to Avascular Necrosis.

    I required high dose Prednisone from the beginning of my diagnosis and my hips started becoming necrotic within 3 years. I was very young and scared to have such major surgery so I put it off for a very long time. I lived in severe pain on narcotics for about 4 years.

    In June, 2000, I had my first hip replacement, and in June, 2001, my other one done. I've had my new hips now for 8 years and they are GREAT!! Once I got through the surgery and recovery, my pain was gone completely. It felt so good to have my life back. To get off the pain meds and be able to keep up with my 2 young children. I'm sure that must be a challenge for you with 3 children so young.

    I am truly glad that I had the surgery. Avascular Necrosis is no fun to deal with. I understand your pain firsthand, and I'm very sorry you are suffering. It is good to hear that you have excellent Doctors and a Hospital you trust.

    I wanted to let you know you are not alone, and if you have any questions, feel free to ask.

    Take care,

    Lori

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    Default Hi Lauri

    Quote Originally Posted by laurid8967
    Hi Dona!
    Welcome to the forum - its truly a wonderful and safe place for us lupies! Where in Boston do you live?? I am from Quincy!! Wow - small world - weve probably been to all the same docs - lol!
    Again, welcome, and I look forward to getting to know you!!
    Lauri
    Hi Lauri
    I live in Brockton, MA. Southern part of Brockton, almost West Bridgewater line. Anyways, thank you for your post. How old are you if you don't mind me asking? Its great to know that I'm not the only person with Lupus, I just feel sometimes that I'm the only person with Lupus, and sometimes bad luck but I know to that some people have it 10 times worse than I do.
    Thank you again for your reply, it was good to talk to you again.
    Dona

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    Quote Originally Posted by Rastagirl
    Hi Dona and welcome,

    I've had Lupus for 26 years and have had both of my hips replaced due to Avascular Necrosis.

    I required high dose Prednisone from the beginning of my diagnosis and my hips started becoming necrotic within 3 years. I was very young and scared to have such major surgery so I put it off for a very long time. I lived in severe pain on narcotics for about 4 years.

    In June, 2000, I had my first hip replacement, and in June, 2001, my other one done. I've had my new hips now for 8 years and they are GREAT!! Once I got through the surgery and recovery, my pain was gone completely. It felt so good to have my life back. To get off the pain meds and be able to keep up with my 2 young children. I'm sure that must be a challenge for you with 3 children so young.

    I am truly glad that I had the surgery. Avascular Necrosis is no fun to deal with. I understand your pain firsthand, and I'm very sorry you are suffering. It is good to hear that you have excellent Doctors and a Hospital you trust.

    I wanted to let you know you are not alone, and if you have any questions, feel free to ask.

    Take care,

    Lori
    Thank you so much for the info, I hope your feeling much better. In a few weeks, I'll be talking to an orthopedic surgeon, and will talk about my options of surgery, that kinda thing. I've been in so much pain with my hips since Christmas of last year, that its totally gotten out of hand, but If it makes my life better with a hip replacement and NO pain then I will definately get it done soon.!!
    Thank you so much again for your reply, it made my day!!
    Dona

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    Default Thank you for the information on surgery!

    Quote Originally Posted by Saysusie
    Hi Dona :lol:
    Welcome to our family. We will be more than happy to help you learn as much as you can about Lupus, its symptoms, its treatments, its medications, and how to manage your lupus. Everyone here is understanding, supportive, comforting, and informative. I'm glad that you joined us :lol:
    Avascular Necrosis occurs when the blood supply to a bone diminishes, often leading to tiny breaks in the bone and eventually to the bone's collapse. The hip joint is commonly affected (the ends of the bone (epiphysis) of the femur, the bone extending from the knee joint to the hip joint), although avascular necrosis can occur in other bones as well. Avascular necrosis can be caused by lupus itself or by high doses of corticosteroids used to treat the disease.
    Avascular Necrosis is also known as Osteonecrosis, aseptic necrosis, and ischemic necrosis. Other common sites affected include the upper arm bone, knees, shoulders, and ankles. The disease may affect just one bone, more than one bone at the same time, or more than one bone at different times. According to the American Academy of Orthopaedic Surgeons, 10,000 to 20,000 people develop osteonecrosis each year, and most of them are between 20 and 50 years of age. Osteonecrosis is the underlying diagnosis in approximately 10 percent of hip replacements.
    The amount of disability that results from osteonecrosis depends on what part of the bone is affected, how large an area is involved, and how effectively the bone rebuilds itself. Normally, bone continuously breaks down and rebuilds - old bone is replaced with new bone. This process - which takes place after an injury as well as during normal growth - keeps the skeleton strong and helps it to maintain a balance of minerals. In the course of osteonecrosis, however, the healing process is usually ineffective and the bone tissues break down faster than the body can repair them. If left untreated, the disease progresses, the bone collapses, and the joint surface breaks down, leading to pain and arthritis.
    Aside from injury, one of the most common causes of osteonecrosis is the use of corticosteroid medications such as prednisone. Corticosteroids are commonly used to treat inflammatory diseases such as systemic lupus erythematosus. Doctors are not sure exactly why the use of corticosteroids sometimes leads to osteonecrosis. They speculate that the drugs may interfere with the body's ability to break down fatty substances called lipids. These substances then build up in and clog the blood vessels, causing them to narrow and to reduce the amount of blood that gets to the bone. Some studies suggest that corticosteroid-related osteonecrosis is more severe and more likely to affect both hips (when occurring in the hip) than osteonecrosis resulting from other causes.
    Total hip replacement is an option for nearly all patients with diseases of the hip that cause chronic discomfort and significant functional impairment. Most patients have an excellent prognosis for long-term improvement in symptoms and physical function. Currently, a cemented femoral component using modern cementing techniques, paired with a porous-coated acetabular ( the cup-shaped socket of the hip joint which is a key feature of the pelvis. The head (upper end) of the femur (the thighbone) fits into the acetabulum and articulates with it, forming a ball-and-socket joint) component, has been found to give excellent long-term results. Revision of a total hip replacement is indicated when mechanical failure occurs. Continued periodic follow-up is necessary to identify early evidence of impending failure so as to permit remedial action before a catastrophic event.
    Hip replacement procedures are done in three techniques; cemented, uncemented and hybrid fixation technique:

    Cemented (aka: Acrylic with Cement Fixation):
    Artificial joints date back to the 1800's when surgeons used prostheses of various materials, one being an all metal hip with metal screws. There were problems with erosion and loosening however. In the 1960's a British orthopedic surgeon Sir John Charnley developed a prosthesis made of high density polyethylene. The prosthesis was held in place with methylmethacrylate cement. Now, the surgery is basically the same. During the surgery, the acetabular component of the hip is replaced by a cup made of polyethylene. The femoral head of the thigh bone is replaced by a metal ball attached to a stem. How the femoral stem is secured into the thigh bone is now an option for surgeons. Over time (10 to 15 years) the cement will erode and need to be replaced. The recovery time for this prosthesis is faster than other methods.

    Cementless Design
    Cement had traditionally been used but in the 1980's a cementless design was developed. The difference between the cement and uncemented version of the hip prosthesis is the lattice grid that comprises the socket part of the uncemented prosthesis. The cementless design is a porous implant. The intent is, through biologic fixation, that bone grows into and through the pores in the implant, thereby securing it.
    In theory the cementless joint replacements are expected to reduce the chance of infection and loosening of the prosthesis, which are the two major complications of hip replacement surgery. Recent research, however, indicates that both the cemented and cementless joints do very well.
    The problem of loosening is the focus of current research. Some researchers feel the way the bone is prepared or where the bone contacts the cement may be the problem and cause a breakdown. Other researchers believe that as cement flakes into microscopic particles it creates an inflammatory response in the body which leads to bone loss where bone meets cement. Yet another problem may involve the wearing down of the plastic liner.
    In spite of potential loosening, the patient can expect many years of excellent results before a problem possibly occurs. 90% or more of patients having hip replacement surgery experience significant pain relief and improved range of motion. The surgery is considered highly successful.

    Hybrid Fixation Technique:
    Now days, joint implant technology is constantly improving, enabling the artificial joint to last longer. The hybrid fixation is where one part of the hip prosthesis (generally the stem) is cemented together while the other part of the hip (generally the socket) is inserted without cement.
    Scientists are now working on using ceramics and coral to be used as joint replacements in the future. Hospital stay after surgery usually lasts for five days. After the hospital stay, you will probably require the aid of a walker for a few days before putting full weight on the leg.

    Aftercare;
    On the first post operative day of your surgery, bed rest will be advised with your legs abducted to prevent dislocation. However, mobilization out of bed depends on your Surgeon and may start on first day. Bed exercises such as quadriceps contraction and ankle exercises will be encouraged for enhanced circulation.
    Routine chest physiotherapy will be given to prevent any chest complications. On the second day after the operation, you may be required to walk to the bathroom, with the help of a walker. You will gradually be ambulated to walk with crutches, and will be taught special maneuvers to help you with daily activities, like climbing stairs.
    Following hip operations, a catheter remains in for two days and you will probably be told to use bedpan for elimination needs.
    From the second day after the operation, you probably will not require the catheter or the bedpan. The nurse will examine the bandage and apply a new dressing.
    On the third post operation day, a hip X-ray will be taken and reviewed by the surgeon. Patients are usually discharged on the forth to fifth day after the operation. The use of crutches or a walker may be necessary for as long as 3 months, although most people who did not use them before are able to walk without them in several weeks.
    Full recovery from the surgery takes about 3 to 6 months, depending on the type of surgery, your overall health, and the success of your rehabilitation. Hip replacement is one of the most successful orthopaedic surgeries performed. Studies have shown that more than 90 percent of people who have hip replacement surgery will never need to replace an artificial joint. However, because more people are having hip replacements at a younger age, and wearing away of the joint surface becomes a problem after 15 to 20 years, replacement of an artificial joint, which is also known as revision surgery, is becoming more common. It is more difficult than first-time hip replacement surgery, and the outcome is generally not as good, so it is important to explore all available options before having additional surgery.
    Doctors will consider revision surgery for two reasons: 1) if medication and lifestyle changes do not relieve your pain or your disability,
    or 2) if X-rays of the hip show damage to the bone, around the artificial hip, that must be corrected before it is too late for a successful revision. This surgery is usually considered only when bone loss, wearing of the joint surfaces, or joint loosening shows up on an X-ray. Other possible reasons for revision surgery include fracture, dislocation of the artificial parts, and infection.

    I am sure that your doctor and your surgeon will go over all of this with you again. I wanted to make sure that you had information about the surgery so that you will be able to make an informed decision with your doctors. I hope that this was helpful. Please let me know if you need anything more :lol:

    Peace and Blessings
    Saysusie
    Hi Saysusie,
    Thank you so much for the information, you don't know how relieved I am to know that i'm not the only person with Lupus and thank you again for the information on the surgery.
    I look forward to talking to you again,
    Dona

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    [quote="KathyW1958"]Hi Dona,

    Welcome to the forum. I am pretty new here, but have had Lupus most of my life. I did not get diagnosed until I was 36 years old though, because in my case the Lupus progressed rather slowly and did not get bad until after I got the chickenpox. I fortunatley have never had it attack my kidneys, but it did attack my heart muscle is how I got diagnosed. I never had the fluid around the lungs or the heart. I have had the Costal Chondritis and things like that. As you know Lupus affects everyone differently and it is the most mind boggling thing you can deal with. There will be others that come in here that can give you better answers. Saysusie is great and so is Rob and a few others. Welcome to the forum and god bless.

    Kathy[/quote

    Hi Kathy,
    I'm sorry to hear that you have Lupus, I know its SO mind boggling at times with Lupus. Is your condition better since you got diaganosed?
    I hope to hear back, and talk to you soon.
    Thank you again,
    Dona

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    Hi Dona,
    Yes I am doing a lot better since I got diagnosed. I still have flares every now and then, but the medications do definitely help. Lupus tends to run in cycles if you know what I mean. There is no cure and unfortunately no matter what medications you take the illness will flare up. A lot of the flares are my own fault. I am very sensitive to the sun and its UV rays and at times I have to go out in the sun. I use sunscreen every day and things like that and I always wear long pants and long sleeved shirts. When I was younger I did not protect myself fron the sun and have paid for it dearly by the scars on my arms and hands and face from the Lupus lesions. I also have Sjogrens and Pompholyx Eczema on my hands and feet. I have Osteo of the Spine. I also have Celiacs Spru. I am doing a lot better with the dietary restrictions and the medications since being diagnosed with Lupus in 1996. I believe that had I not gotten diagnosed when I did that I would not be here amongst the living today, because the Lupus was attacking my heart muscle and it was causing me to have a severe heart arythmia and that could have killed me instantly, from what my doctor told me after he got me through that. Anyways, yes the medication is definitely helping me and I am also RO positive. Are you doing much better since being diagnosed?

    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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