FAQ - amyloidosis
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Can Amyloidosis alter the effects that certain pain medications on someone?

I have Amyliodosis and I just had surgery a few days (not related to the amyloidosis) and they prescribed Percocet for the pain, but it has done nothing to ease the pain. The surgeon that did the surgery can't seem to understand why it's not working considering how strong of a pain medication it is. So I am wondering if Amyloidosis could alter the effect's the pain medication would have. I'm a 22yr old female.

What type of amyloidosis do you have? AL (Primary) is treated with various chemotherapies and that would surely affect your coping with pain meds. They might be contra-indicated. If you have familial (inherited) your peripheral neuropathy would certainly affect pain meds and with AA( Secondary) your primary disease would also affect the meds. Your amyloidosis doctor should be consulted before any medications are taken and any "non related' procedurers performed. What some doctors who do not know the rare disease amyloidosis might think is not a result of the disease might be quite surprised if they consulted an amyloidosis specialist at Mayo or Boston University Medical Center.

They are on our website under medical links www.amyloidosissupport.com under medical links. We also have a yahoo on line group for sharing these problems and challenges http://health.groups.yahoo.com/group/AmyloidosisSupportGroups/
and we also have face to face support groups. They are also noted on our website.

Good Luck and God Bless

Muriel Finkel
ASG www.amyloidosissupport.com
Toll Free 866-404-7539
National Organization Member of NORD
www.amyloidosisonline.com - Over 750 have joined

"Don't Take Your Organs To Heaven, Heaven Knows We Need Them Here"  (+ info)

Does anyone know of a good online support group for Amyloidosis?

I am a 22yr old female recently diagnosed with Amyloidosis, I have been looking for a local or nearby support group and I can't find one. So now I'm looking for a good online support group.

I was caregiver and advocate for my sister when she went through treatment for amyloidosis at the Fred Hutchins Center in the Seattle Cancer Care Alliance ( SCCA ) last fall. The condition is very rare, there may not be a support group in existence for it.





http://www.seattlecca.org/  (+ info)

How fast can primary amyloidosis spread? And what is the average survival rate for this disease?

As recently as 1994, a diagnosis of amyloidosis was a death sentence; average life remaining after diagnosis, 13 months. Now there is hope--not certainty of a long life, but 25% to 60%. depending onj individual circumstances. I was diagnosed 2/99, treated 6/99, recovered completely, relapsed 11/03, and am still kicking.

Your best bet for one-stop shopping for amyloidosis information on the net is http://www.amyloidosis.org. There is also a Yahoo group named amyloidosis and also a mailing list named amyloid hosted by the Association of Cancer Onliine Resources. The amyloid list has aroiund 500 subscribers, amyloidosis Yahoo group has maybe half that many. Face-to-face support for patients and caregivers is also availabe in most large metropoolitan areas two or three times a year. See http://www.amyloidosissupportgroups.com for details.

To join the amyloid list, see http://www.acor.org/amyloid.html . I hang out on thte amyloid list. Nothing against the Yahoo group, I just found the ACOR first, I know the regulars there. I'm one of them, actually. Hope this helps.  (+ info)

Does anyone else on here have amyloidosis?

NYDoc: I am all ears. I have many questions. For starters, it has been determined that I have amaloids in my heart and kidneys, I am scheduled for a bone marrow biopsy; am I proceeding in the right direction? Will the bone marrow biopsy determine which type of amyloidosis I have?

I don't have it but, I have found information that may be helpful:

Cardiac amyloidosis usually occurs during primary amyloidosis, also called AL type amyloidosis. Primary amyloidosis is often seen in persons with multiple myeloma, a type of cancer.

Cardiac amyloidosis, also called "stiff heart syndrome," occurs when amyloid deposits take the place of normal heart muscle. It is the most typical type of restrictive cardiomyopathy. Patients with cardiac amyloidosis may have changes in the way electrical signals move through the heart. This is called a conduction disturbance.

Secondary amyloidosis, also called AA type, rarely affects the heart. However, a subtype of secondary amyloidosis, called senile amyloidosis, involves the heart and blood vessels. Senile amyloidosis is caused by overproduction of a protein different from both the AA and AL types. Senile cardiac amyloidosis is becoming more common as the average age of the population increases.

Cardiac amyloidosis is more common in men than in women. The disease is rare in people under age 40.

Palpitations (sensation of feeling heart beat)
Swelling of legs, ankles, or other part of the body (See: abdominal swelling)
Excessive urination at night
Fatigue, reduced activity tolerance
Shortness of breath with activity
Trouble breathing while lying down
Some patients may have no symptoms.

Exams and Tests:
It can be difficult to diagnose cardiac amyloidosis, because the signs can be related to a number of different conditions.

The health care provider may hear abnormal sounds in the lung (lung crackles) or a heart murmur when listening to your heart and chest with a stethoscope. This may suggest fluid in the lungs, enlargement of the heart, or other illness. A physical exam may reveal a swollen liver and enlarged neck veins. Blood pressure may be low or may drop when you stand up.

The following tests may be used to help diagnose cardiac amyloidosis:
Chest x-ray
Chest or abdomen CT scan
Coronary angiography
Nuclear heart scans (MUGA, RNV)
Magnetic resonance imaging (MRI)
An ECG may show problems with the heart beat or heart signals (conduction disturbance).

A cardiac biopsy is used to confirm the diagnosis. A biopsy of another area, such as the abdomen, kidney, or bone marrow, is frequently done to confirm the diagnosis of amyloidosis.

You can continue to exercise as long as feel like you can.

Your doctor may tell you to change your diet. This may include salt and fluid restrictions.

Diuretics (water pills) may be given to help the body remove excess fluid. The doctor may tell you to weigh yourself everyday. A weight gain of three or more pounds over 1 or 2 days can mean there is too much fluid in the body.

Digoxin, calcium channel blockers, and beta blockers may be used with caution in patients with atrial fibrillation. However, the dosage must be carefully monitored, since patients with cardiac amyloidosis may be unusually sensitive to any side effects.

Other treatments may include:

Prednisone, an anti-inflammatory medicine
Pacemaker, if there are problems with heart signals
A heart transplant may be considered for some patients with very poor heart function. However, it is not done in those with AL type amyloidosis, since the disease weakens many other organs. A liver transplant is needed in those with hereditary amyloidosis.

Yes, it does sound like you are going in the right direction & yes they should be able to diagnose whic type by the bone marrow biopsy. Good luck!

Here's some additional resources that you might like to read through:
http://www.amyloidosis.org/download/Definition%20of%20Organ%20involvement%20AJH%20July%202005.pdf  (+ info)

What kind of Dr treats amyloidosis, and what is the treatment for it ?

Amyloidosis is a group of diseases in which amyloid—a protein-like substance—builds up in the organs and tissues. The buildup may happen systemically (throughout the body) or locally (in one tissue).

There are four major types of systemic amyloidosis:

Primary amyloidosis (the most common form), typically caused by a buildup of fragments of antibody proteins
Hereditary amyloidosis, a genetic form passed down in families
Reactive or secondary amyloidosis, which develops along with a chronic inflammatory disease, such as rheumatoid arthritis
Beta2-microglobulin amyloidosis—beta2-microglobulin is a protein that can build up in the blood as a result of kidney failure. This type of amyloidosis occurs in people who have been on dialysis for a long time.
Amyloid deposits can affect any organ or tissue. Localized amyloidosis affects more than 90% of people with Type II diabetes mellitus, people with certain cancers of the thyroid or other tumors of the endocrine system, and about 80% of people over age 80. It also affects people with conditions such as Alzheimer's disease, Down's syndrome, hereditary cerebral hemorrhage, and the disease commonly known as "mad cow disease."


Signs and Symptoms

The signs and symptoms depend on the location and size of the amyloid deposits.

Any tissue may be affected in primary amyloidosis. Signs and symptoms may include the following:

Heart disease and irregular heart beat
Kidney disorders, including kidney failure
Gastrointestinal (GI) disorders, such as perforation (hole), bleeding, slow movement of matter through the GI tract, and blockage
Enlarged liver
Diminished function of the spleen
Diminished function of the adrenal and other endocrine glands
Problems in transmitting nerve signals, which could lead to impotence, gastrointestinal problems, and orthostatic hypotension (low blood pressure upon standing)
Carpal tunnel syndrome (compression and irritation of the median nerve in the wrist)
Skin conditions, such as growths, color changes, purpura (bleeding into the skin) around the eyes, and easy bruising
Enlarged tongue, sometimes with swelling under the jaw, breathing difficulties, and sleep apnea
Lung problems
Swelling of the shoulder joints (may look like shoulder pads under the skin)
Susceptibility to bleeding problems
Signs and symptoms of hereditary amyloidosis may include the following:

Nervous system disorders
Gastrointestinal conditions, such as diarrhea and weight loss
Heart problems
Kidney disease, though this is less common than in primary amyloidosis
Signs and symptoms of secondary amyloidosis may include the following:

Kidney disease, which may lead to kidney failure; this is the cause of death in 40 to 60% of cases
Enlarged liver
Enlarged spleen
Heart problems—this is rare, and less severe than in other forms of amyloidosis
Most people who are diagnosed with secondary amyloidosis have had their related inflammatory disease for a decade or more.

Beta2-microglobulin amyloidosis usually occurs in people who have end-stage renal (kidney) disease and need long-term dialysis, but it also can occur in people who use ambulatory dialysis. Deposits are often found in bones and joints. Such deposits may cause carpal tunnel syndrome, joint pain and stiffness, soft tissue masses, bone cysts, and fractures.


What Causes It?

The body naturally makes amyloid as it ages and deposits the amyloid in the space surrounding the cells. Some people accumulate abnormal amounts of amyloid, causing amyloidosis. Many factors can play a part in this; the process depends on the form of the disease. Hereditary amyloidosis results from genetic changes that cause the body to make abnormal proteins. Age seems to play a role in amyloidosis—researchers think the disease may be triggered by damage that accumulates in the body over time. This kind of damage may come from the body's use of oxygen (oxidation) and from free radicals (harmful by-products formed when cells use energy). Amyloid is also more likely to form in people who have immune system problems. Once amyloid deposits have started, they seem to continue building up in the same locations.


Who's Most At Risk?

People with the following profile are at increased risk for developing amyloidosis:

Being more than 50 years old. Cases do occur in younger adults and children, usually in those with an inflammatory condition such as juvenile rheumatoid arthritis. However, most cases are diagnosed in older people. Even in people with hereditary forms, amyloid deposits severe enough to cause problems are detected later in life.
Disease affecting the antibody-producing plasma cells in the blood (such as multiple myeloma, malignant lymphoma, benign monoclonal gammopathy, or Waldenström's macroglobulinemia)
Chronic inflammatory disease (such as rheumatoid arthritis, inflammatory bowel disease, familial Mediterranean fever, or ankylosing spondylitis); this may cause secondary amyloidosis
Long-term dialysis—almost all patients with end-stage renal disease who are on hemodialysis for more than 5 years develop amyloid deposits
Inherited genetic changes that affect proteins in the body
Long-term infection such as leprosy, tuberculosis, or osteomyelitis; this may bring on secondary amyloidosis


What to Expect at Your Provider's Office

Your healthcare provider may suspect amyloidosis based on your symptoms. Tests of blood, urine, bone marrow, or biopsies (samples of tissue) from abdominal fat, the rectum, or an affected organ may show signs of amyloid deposits. With hereditary amyloidosis, DNA tests may reveal the genetic change that caused the condition. Specialized X-ray studies of tissue samples may show the structure of amyloid deposits. Depending on the signs and symptoms, your healthcare provider may use other tests to find out more about your condition, such as which organs are affected and whether your condition is getting worse.


Treatment Options


Those who have hereditary amyloidosis in their family should consider going to genetic counseling to learn about the risks of passing the condition to their children.


Treatment Plan

In most people, treatment can help support health and reduce the impact of amyloidosis, but cannot cure the disease. Treatment involves decreasing the proteins that can make up amyloid. Chemotherapy is used for primary amyloidosis. There is no treatment per se for secondary amyloidosis; the underlying condition must be treated. A liver transplant may be necessary for hereditary amyloidosis. A kidney transplant may cure amyloidosis related to dialysis.


Drug Therapies

Under select circumstances, certain drug combinations, many of which are under investigation, have been used to treat primary amyloidosis. For amyloidosis related to kidney failure, researchers are studying other treatments, such as using new dialysis systems and adding antioxidants to the dialysis fluid; antioxidants may help rid the body of unstable compounds known as free radicals.

To help relieve symptoms, a healthcare provider may suggest:

Diuretics to relieve swelling caused by fluid retention
Anti-arrhythmics to control heart rhythm
Metoclopramide to help empty food from the stomach
Antibiotics to control bacteria that may cause diarrhea or prevent the body from absorbing nutrients


Surgical and Other Procedures

Depending on which parts of the body are affected, the person with amyloidosis may need one of the following procedures:

Dialysis for those whose kidneys are failing
Kidney, liver, heart, or bone marrow transplant
Spleen removal
Carpal tunnel surgery
Hip replacement
Pacemaker implantation to control heart rhythm


Complementary and Alternative Therapies

Dietary choices, supplements, and herbs that aid in diminishing inflammation in general may, theoretically, help to prevent amyloidosis. Damage from oxidation may play a role in development of amyloidosis (see section entitled What Causes It?), particularly beta2-microglobulin, the form of amyloidosis related to hemodialysis. Along with changing dialysis methods, adding antioxidants may slow the disease. Animal studies support the idea that dietary changes to decrease inflammation and provide antioxidants slow the development of amyloidosis.



Several studies have examined the role of diet in amyloidosis. Some animal studies suggest that the following dietary choices may help prevent the disease for one who is at high risk or slow the disease process once amyloidosis has developed:

Limit the amount of meat consumed; researchers suspect that a substance called amyloid enhancing factor (AEF), sometimes found in diseased animal foods, may increase the risk of amyloidosis in people who eat these foods; AEF does hasten the growth of amyloid deposits in mice.
Take fish oil supplements, which are high in omega-3 fatty acids; helps to reduce inflammation in chronic inflammatory conditions such as rheumatoid arthritis and appears to help prevent amyloidosis in mice.
Vitamin C – a well designed animal study suggested that high doses of vitamin C may help the body break down amyloid and prevent amyloidosis from worsening.
While of these results represent a beginning and show promise, it is difficult to draw definitive conclusions about people from animal findings.

Additional nutritional information includes:

Bromelain, an enzyme derived from pineapple, may help break down amyloid deposits in kidney tissue; this is suggested by a laboratory study performed on tissue samples from the kidney of one person with a family history of amyloidosis; this preliminary finding does not indicate how this information will translate to treatment or prevention of amyloidosis for people in general.
Glutathione – low levels may be associated with higher levels of beta2-microglobulin in people on dialysis with or without amyloidosis; this suggests that there may be a link between glutathione levels in the blood and development or worsening of beta2-microglobulin amyloidosis. Although studies have not been conducted to evaluate supplementation with glutathione for amyloidosis, some clinicians may recommend 500 mg two or three times a day to people on dialysis to try to prevent the disease.
Traditionally, certain health care professionals have recommended the following to try to help prevent inflammation in general:

Avoid processed foods, caffeine, food additives, dairy products, and refined sugars.
Eat more whole grains, fresh fruits and vegetables, nuts, seeds, and cold-water fish.



Flavonoids are plant compounds that fight damage from oxidation and free radicals, as well as inflammation. They may be useful as a complement to standard medical care in treating amyloidosis:

Pycnogenol, which comes from the bark of French maritime pine (Pinus maritima), is rich in flavonoids. One laboratory study suggested that pycnogenol protected cells of cattle from free radical damage due to amyloid deposits.
Gingko biloba extract (GBE) also contains flavonoids. GBE has shown good results compared to standard medications for treating Alzheimer's disease. Given the link between Alzheimer's and amyloid deposits, GBE may help treat amyloidosis as well, especially because it is also an antioxidant.


Prognosis/Possible Complications

Most people with primary amyloidosis die within two years of diagnosis, usually of heart failure, uremia (toxic buildup of wastes in the blood), or other complications. About 20% survive 5 years or longer. With secondary amyloidosis, most people survive 5 to 10 years after their condition surfaces. Survival depends on how well the underlying condition is treated. In hereditary amyloidosis, the outlook varies depending on the type of gene mutation and when the condition is diagnosed. Some people survive as long as 15 years after the disease develops. In people with certain mutations that cause problems earlier in life (around age 20 to 30), the disease tends to worsen more quickly and cause death sooner. Kidney transplants stop beta2-microglobulin amyloidosis, but most patients are poor candidates for surgery.

People with amyloidosis affecting the heart are extremely sensitive to certain medicines. Digoxin may cause fatal irregular heartbeat. Calcium-channel blockers may worsen congestive heart failure. Diuretics and vasodilators may cause life-threatening low blood pressure.


Following Up

After diagnosis, tests may be performed on a regular basis to check levels of protein-related substances, the size and placement of amyloid deposits, the development of the disease, and the effects of treatment  (+ info)

Does Amyloidosis always cause weight loss?

Can it possibly cause weight gain? (when heart failure isn't present) Can an overweight person have Amyloidosis?

  (+ info)

What is primary amyloidosis with cardiomyopathy?

History: Patients often present with nonspecific symptoms such as weakness and weight loss. The presenting symptoms depend on the TTR variant present and the organ(s) involved. Amyloid deposition in a particular organ leads to similar clinical consequences, and therefore similar complaints, regardless of the type of amyloid deposited. For example, cardiac ATTR and cardiac AL cause similar symptoms. The most common sites of deposition are the following:

* Cardiovascular involvement

o Patients with cardiac deposition often present with symptoms suggesting congestive heart failure (ie, dyspnea on exertion, peripheral edema) and/or arrhythmias (ie, palpitations, lightheadedness, syncope).

o Deposition in the subendothelium of the peripheral vasculature can lead to severe postural hypotension.

Background: The amyloidoses are diseases of secondary protein structure, in which a normally soluble protein forms insoluble extracellular fibril deposits, causing organ dysfunction. All types of amyloid contain a major fibril protein that defines the type of amyloid, plus minor components. Twenty different fibril proteins have been described in human amyloidosis, each with a different clinical picture (see Amyloidosis, Overview). One of the 20 proteins that form human amyloid fibrils is transthyretin (TTR).

TTR is a serum protein that transports thyroxine and retinol-binding protein. It circulates as a tetramer of 4 identical subunits of 127 amino acids each. TTR formerly was called prealbumin because it migrates anodally to albumin on serum protein electrophoresis, but this name was misleading because TTR is not a precursor of albumin. The TTR monomer contains 8 antiparallel beta pleated sheet domains. TTR is synthesized primarily in the liver, as well as in the choroid plexus and retina. Its gene is located on chromosome 18 and contains 4 exons.

The systemic amyloidoses are designated by a capital A (for amyloid) followed by the abbreviation for the chemical identity of the fibril protein. Thus, for example, TTR amyloidosis is abbreviated ATTR, and amyloidosis of the immunoglobulin light chain type is abbreviated AL.

Pathophysiology: Both normal-sequence TTR and variant-sequence TTR form amyloidosis. Normal-sequence TTR forms cardiac amyloidosis in people who are elderly and is termed senile cardiac amyloidosis (SCA). When it was recognized that SCA often is accompanied by microscopic deposits in many other organs, the alternative name senile systemic amyloidosis (SSA) was proposed. Both terms are used now.

TTR mutations accelerate the process of TTR amyloid formation and are the most important risk factor for the development of clinically significant ATTR. More than 85 amyloidogenic TTR variants cause systemic familial amyloidosis. The age at symptom onset, pattern of organ involvement, and disease course vary, but most mutations are associated with cardiac and/or and nerve involvement. The gastrointestinal tract, vitreous, and carpal ligament are also frequently affected.

Amyloidogenic TTR mutations destabilize TTR monomers or tetramers, allowing the molecule to more easily attain an amyloidogenic intermediate conformation. Other, unknown factors also play a role in TTR amyloid formation because the clinical picture of disease varies widely among people carrying the same TTR variant.

When the peripheral nerves are affected prominently, the disease is termed familial amyloidotic polyneuropathy (FAP). When the heart is involved heavily but the nerves are not, the disease is called familial amyloid cardiomyopathy (FAC). Regardless of which organ is involved most heavily, the general term is simply amyloidosis-transthyretin type, abbreviated ATTR.  (+ info)

Can you give me some information on cardiac amyloidosis?

Amyloid deposits can be found commonly in hearts during autopsy examination. The incidence increases with advanced age (mostly in patients over 60 years of age). Myeloma -associated (primary) amyloidosis :  Cardiac involvement occurs in approximately 90% of cases of myeloma-associated (primary) amyloidosis.
This form of amyloidosis occurs in association with multiple myeloma but may also occur in the absence associated disease.
Amyloid deposits are most likely to involve the spleen, kidneys, liver, and adrenal glands.
Secondary amyloidosis :  Cardiac involvement also occurs in about 55% patients with amyloidosis associated with chronic illness (secondary amyloidosis) such as rheumatoid arthritis, tuberculosis, osteomyelitis, bronchiectasis, or lymphoma.
In this type of amyloidosis the major deposits occur in the tongue, gastrointestinal tract, lungs, skeletal muscles, skin and other mesodermal tissues and organs in addition to the heart.
Ref:1) Amyloidosis and the heart: a comprehensive review.Arch Intern Med. 2006 Sep 25;166(17):1805-13
2) Cardiac pathology of extracardiac origin (II). The cardiac repercussion of amyloidosis and hemochromatosis.Rev Esp Cardiol. 1997 Nov;50(11):790-801  (+ info)

Cen anyone tell me anything about a condition called amyloidosis ?

Amyloid refers to a starch and it is when this starch is deposited abnormally in some tissues or organs of the body, and usually happens as a side effect of other conditions like multiple myeloma's, rheumatoid arthritis, tuberculosis and Alzheimers amongst ordinary inflammatory diseases or chronic infections.

This starchy deposit impairs the function of the tissue or organ. The side effects will depend on what tissue or organ is involved. For example if the kidneys are involved it will impair the removal of wastes from the body, maintenance of blood pressure and water and acid/base balance in the body, regulation of red blood cell production etc  (+ info)

Is there a treatment for cutaneous amyloidosis: Macular Amyloidosis?

for acne,fair complexion,tanning,sunburn,marks,
spots,make up tips,hair issues n other skin n hair problems
u can refer to dis website
it has got so many tips n free beauty samples
for curing acne and all your skin problems  (+ info)

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