is there a cure for lichen amyloidosis?
ITS A DISEASE OF THE SKIN which is hereditary
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Good Luck. Hope this helps. (
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Does anyone know of anyone that has Amyloidosis AA?? If yes, please contact me ASAP. Thank you kindly!!!!
A very good friend of mine has the disease Amyloidosis AA and is very ill. We need to find a doctor that will be able to him recover as there is no cure for this. There are clinics that provide treatment to slow down the process of the disease however, we do not know how to go about it and where to start. Any information would be greatly appreciated as the disease is fatal.
Please help if you know anything and thank you kindly,
Paola
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I am sorry to hear about the condition of your friend. Possibly your friend might find some leads for doctors from the link below:
http://www.cigna.com/healthinfo/nord22.html
If you click on the next link and scroll all the way down to the section called Medical Care, you will find info on possible treatments.
http://www.emedicine.com/med/topic3388.htm
I also did a bunch of searches. Unfortunately, I did not find much information. However, I will leave you the links just in case you want to look at them. You might find something I missed.
General Google search.
http://www.google.com/search?hl=en&q=Amyloidosis+AA+treatment&btnG=Google+Search
National Institutes of Health (NIH)
http://search2.google.cit.nih.gov/search?site=NIH_Master&client=NIHNEW_frontend&proxystylesheet=NIHNEW_frontend&output=xml_no_dtd&filter=0&getfields=*&q=amyloidosis+AA&btnG.x=27&btnG.y=6
Mayo Clinic
http://mayoclinic.com/health/amyloidosis/DS00431/DSECTION=treatments-and-drugs
There are no clinical studies for this illness right now, but I will leave you the link below, in case you want to check it in the future.
http://clinicaltrials.gov/ct2/results?term=amyloidosis+AA
I'm sorry I could not find anything more definite for doctors or treatment centers. (
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Where can someone get free medical help for Amyloidosis??Soon!?
My Moms husband is dying from this vary rare dieases. He is in the hospital now for about the 5th time in 2 months. They are doing some kind of surgery on him at this time to help keep the fluid from his lungs. Pray he lives through it, Please Prayers welcome!!! His name is Ireno or Eddie as we call him. Thank you!
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I will pray for him!and i don't know where do get medical help for that. (
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Is Amyloidosis always eventually fatal?
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I'm having more numbness now than I am pain, is this a sign that my neuropathy is getting worse?
I have both peripheral and autonomic neuropathy caused by systemic amyloidosis. The numbness I am referring to is in my feet and legs. At first I had alot of pain, I still have pain but now I have more numbness than pain. I am a 22yr old female.
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Med student here. I'll help ya out. It sounds like a progression of your neuropathy. I suggest rest and go back and see your doctor. (
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Can Amyloidosis Lichen be cure ?
This is the most common form of primary localised cutaneous amyloidosis. It presents as an intensely itchy rash on the shins, thighs, feet, and forearms. Lesions consist of multiple raised spots (papules) that are scaly and red/brown in colour. Papules may coalesce into thickened plaques. It appears to be more common in people of Chinese descent and in males. It most often occurs between 50-60 years of age. It may be a variant of lichen simplex. Primary cutaneous amyloidosis is classified into three types: macular, lichen (papular), and nodular. Biphasic amyloidosis is a rare entity characterized by the presence of concurrent lesions of macular and lichen amyloidosis. The macular lesions tend to be distributed on the inter-scapular area and thighs while the papular lesions are most commonly present on the arms and lower legs. The occasional transformation of macular amyloidosis into lichen amyloidosis has been observed. The pathogenesis of cutaneous amyloidosis is poorly understood. There are reports in the literature in which macular amyloidosis developed secondary to chronic friction induced by nylon bath sponges, pumice stones, and coconut fibers. However, larger case series have failed to show a correlation between areas subjected to repeated friction and the development of cutaneous amyloidosis. As already mentioned, there is a higher incidence of cutaneous amyloidosis in Southeast Asia and South America, which implicates a possible genetic or environmental etiologic factor. Indeed, most previously reported cases of biphasic amyloidosis are from Asia. The treatment of lichen and macular amyloidosis is focused on relieving itch. Sedating antihistamines can be moderately effective. There is no cure for most cases of amyloidosis lichen. Some medications, such as corticosteroids, chemotherapy agents and colchicine, may decrease inflammation and treat some cases of amyloidosis lichen, but they are not very effective if the disease is severe or highly advanced. Peripheral blood stem cell transplantation involves using high-dose chemotherapy and transfusion of previously collected immature blood cells (stem cells) to replace diseased or damaged marrow. Attacks of fever, joint, and abdominal pains, can be prevented with the medication colchicine. Other treatments tried include topical dimethyl sulfoxide (DMSO) and phototherapy (UVB) or PUVA).
I add a link containing details of this subject
http://www.emedicine.com/
derm/topic16.htm
Hope this helps
Matador 89 (
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what type of illness is amyloidosis?
Proteins are important building blocks for all body parts, including muscles, bones, hair, and nails. Proteins circulate throughout the body in the blood and are normally harmless. Occasionally, cells produce abnormal proteins that can settle in body tissue, forming deposits and causing disease. When these deposits of abnormal proteins were first discovered, they were called amyloid, and the disease process amyloidosis.
In recent years, researchers have discovered that different kinds of proteins can form amyloid deposits and have identified several types of amyloidosis. Two of these types are closely related to kidney disease. In primary amyloidosis, abnormal protein production occurs as a first step and can lead to kidney disease. Dialysis-related amyloidosis (DRA), on the other hand, is a result of kidney disease.
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Primary Amyloidosis
Primary amyloidosis occurs when the body's antibody-producing cells do not function properly and produce abnormal protein fibers made of antibody fragments. Some people with primary amyloidosis have a condition called multiple myeloma. The antibody fragments come together to form amyloid deposits in different organs, including the kidneys, where they cause serious damage. Injured kidneys can't function effectively and may be unable to remove urea and other wastes from the blood. Elevated levels of these protein fibers can also damage the heart, lungs, brain, and digestive system.
One common sign of kidney amyloidosis is the presence of abnormally high levels of protein in the urine, a condition known as proteinuria. Healthy kidneys prevent protein from entering the urine, so the presence of protein may be a sign that the kidneys aren't working properly. A physician who finds large amounts of protein in the urine may also perform a biopsy—take a small sample of tissue for examination with a microscope—to confirm amyloidosis.
Current treatments are aimed at slowing the progression of amyloid build-up. Combination drug therapy with melphalan, a cancer drug, and prednisone, an anti-inflammatory steroid drug, may improve organ function and survival rates by interrupting the growth of the abnormal cells that produce amyloid protein. These are the same drugs used in chemotherapy to treat certain cancers, such as multiple myeloma, and they may have serious side effects, such as nausea and vomiting, hair loss, and fatigue.
Some clinics have reported promising results treating amyloidosis by transplanting the patient’s own blood stem cells to replace diseased or damaged bone marrow. The therapy also requires high doses of melphalan, so side effects can be serious. Patients with heart problems may not be considered for this treatment.
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Dialysis-Related Amyloidosis
Normal kidneys filter and remove excess small proteins from the blood, thus keeping blood levels normal. When the kidneys don't work properly, as in patients receiving dialysis, one type of small protein calle beta-2-microglobulin builds up in the blood. When this occurs, beta-2-microglobulin molecules may join together, like the links of a chain, forming a few very large molecules from many smaller ones. These large molecules can form deposits and eventually damage the surrounding tissues and cause great discomfort. This condition is called dialysis-related amyloidosis (DRA).
DRA is relatively common in patients, especially older adults, who have been on hemodialysis for more than 5 years. Hemodialysis membranes that have been used for many years don't effectively remove the large, complex beta-2-microglobulin proteins from the bloodstream. Newer hemodialysis membranes, as well as peritoneal dialysis, remove beta-2-microglobulin more effectively, but not enough to keep blood levels normal. As a result, blood levels remain elevated, and deposits form in bone, joints, and tendons (the tissue that connects the muscle to the bone). DRA may result in pain, stiffness, and fluid in the joints. Patients with DRA may also develop hollow cavities, or cysts, in some of their bones; these may lead to unexpected bone fractures. Amyloid deposits may cause tears in ligaments and tendons. Most patients with these problems can be helped by surgical intervention.
Half of the people with DRA also develop a condition called carpal tunnel syndrome, which results from the unusual buildup of protein in the wrists. Patients with this condition may experience numbness or tingling, sometimes associated with muscle weakness, in their fingers and hands. This is a treatable condition.
Good luck
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My sister died from Amyloidosis.?
I was wondering if it is as rare as they say it is. Has anyone ever heard of it or lived with it?
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no srry . But am srry about your sister.wait did she die or is that a hysterical (
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Amyloidosis and Excess Protein?
My mother, in her 70s, has been diagnosed with the above condition. It relates to her blood pressure dropping suddenly when she stands up. The cause behind her condition, on the other hand, has been described by her doctors as less than a 1/1 million case:
Her body is manufacturing excess protein on a scale few doctors have ever previously seen.
That's right: less than one in one million Americans suffer from what my Mom has.
My question, succinctly, is: What can cause a person's body, itself, to generate excess protein, to the point it thickens the blood to the point the heart can no longer pump it effectively? Her diet consists of a normaly daily intake of vegetables, fruits, and a meat serving - beef, pork, etc.
Gwiniver:
Please read the details again - carefully. I said that her BODY is manufacturing excess protein - NOT her DIET. The dozen or so different doctors who have either met her or reviewed her test results have no answers or solutions and have never seen this before.
Now she says she was told it is not amyloidosis, just a symptom of it.
In any case, as soon as she is done with physical therapy I'm taking her to a local naturopathic doctor. Modern "medicine" does not have an explanation why someone's body would manufacture by itself excess protein.
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Actually, there are a few causes of amyloidosis. You are correct, that it is very rare. Still I have taken care of a few patients with amyloidosis secondary to different causes. The amyloid is basically small proteins produced by the body, which are deposited in tissues in the extracellular space which is the area between cells. Amyloid can be deposited in different tissues, such as the heart, lungs, kidneys and nerve cells. Different tissues are affected in each case and therefore the manifestations can vary. Orthostatic hypotension is the medical term for the blood pressure decreasing too much upon standing. Your mother has this, because of abnormalities in the nerves that control this in the autonomic nervous system. The amyloid has deposited in these nerves leading to this problem.
The types of amyloidosis include AL (primary), AA (secondary), hereditary amyloidosis, senile amyloidosis and some less common other types that would be unlikely in your mother's case. The type of amyloid present can be determined by the pathologist based on the appearance with certain stains. The composition of the amyloid varies depending on the type and the clinical manifestations can also vary. AL (primary) amyloidosis is the result of excess antibodies, specifically immunoglobulins, as a result of abnormalities in the blood cells that produce these proteins. The most common causes are Multiple Myeloma and Waldenstrom's macroglobulinemia. If the doctor's think this is the type of amyloid your mother has, then they will likely refer her to a Hematologist/Oncologist who are the experts at these disorders.
AA (secondary) amyloidosis is secondary to chronic conditions associated with systemic inflammation. Conditions that can lead to this include Rheumatoid arthritis, chronic infections (e.g. osteomyelitis), spondyloarthopathy, and Familial Mediterranean Fever. The amyloid that is deposited in this disorder is amyloid A, which is actually a normally circulating protein that increases in response to inflammation (acute phase reactant.) Chronic inflammation leads to elevated levels of acute phase reactants like Amyloid A, which can be deposited in the tissues. The majority of cases of amyloidosis are secondary to AL (primary) or AA (secondary).
Familial or hereditary amyloidosis is less common and usually associated with a family history of amyloidosis. If there are no other family members with this, then it is unlikely to be familial amyloidosis. Amyloid deposition in certain organs can also be secondary to hemodialysis for kidney failure and diabetes, but they would be unlikely in your mother's age. There is a senile form of amyloidosis in which the amyloid is deposited in the heart usually. It is important for the doctor's to try to determine the exact cause in your mother's case in order to determine the best treatment. Unfortunately, most cases of amyloidosis are progressive and usually do not respond well to treatment. Each case is different though. It is best to discuss that with your mother's doctor. Also, naturopathic therapies have never been shown to have any benefit for this condition. (
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Does anyone in India have amyloidosis? If so, what treatment is being done? I have been diagnosed,need help?
Any doctors who know of it or persons who are suffering from this skin ailment, please advise. I am 59 years old and was disgnosed 2 years ago. Its getting worse, I am wondering if there is any cure for it. Thanks.
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First off, if you are in the United States of India, there is a clinical trial on new ways to help you if you have Primary Systemic Amyloidosis. Its at the Mayo Clinic in MN. Here's a link:
http://clinicaltrials.mayo.edu/clinicaltrialdetails.cfm?trial_id=100224.
Secondly, here are the treatment options they are using:
http://www.mayoclinic.org/amyloidosis/treatment.html.
As far as I know, there is no known cure yet, buy don't give up! We found a cure for polio, right????
Best of luck to you. (
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