Re: Fwd: Sarcoidosis Treatment Options

[Guest guest]

'Autoimmunity Research Foundation

Ron,

This is Trevor Marshall's protocol. At least in the article, he lists the other drugs being used. I know we have some of his previous enrollees on our site.

Please, if any of you want answers about his stuff-- ask them. It is not a program we can promote.

Thank you,

Tracie

[Guest guest]

'Autoimmunity Research Foundation

Ron,

This is Trevor Marshall's protocol. At least in the article, he lists the other drugs being used. I know we have some of his previous enrollees on our site.

Please, if any of you want answers about his stuff-- ask them. It is not a program we can promote.

Thank you,

Tracie

[Guest guest]

'Autoimmunity Research Foundation

Ron,

This is Trevor Marshall's protocol. At least in the article, he lists the other drugs being used. I know we have some of his previous enrollees on our site.

Please, if any of you want answers about his stuff-- ask them. It is not a program we can promote.

Thank you,

Tracie

[Guest guest]

Thanks Ron...this is great...

I hope to stay wake for the chat tonight...been a long day....

TTFN

Ruth

>

> A MUST READ!!!

>

>

>

> ---------- Forwarded message ----------

> From: concepts@...

> Date: Jul 14, 2006 12:54 AM

> Subject: Sarcoidosis Treatment Options

> To: carollcameron@...

>

> I. Part 1 Background for Minocycline: Antibiotic therapy has been

reported

> to be effective for lung, lymph and cutaneous manifestations of

sarcoidosis

> [5] http://en.wikipedia.org/wiki/Sarcoidosis#_note-4>

> [6]http://en.wikipedia.org/wiki/Sarcoidosis#_note-5>but this

therapy

> is not currently the standard of care. On March 28, 2006,

> the FDA Office of Orphan Products Development designated

> Minocyclinehttp://en.wikipedia.org/wiki/Minocycline>in the

treatment

> of sarcoidosis,

> [1] http://autoimmunityresearch.org/opd-mino-designation-

3apr2006.pdf> with

> the 'Autoimmunity Research Foundation'[2]

> http://autoimmunityresearch.org/>designated as the sponsor.

>

> Minocycline: Minocycline hydrochloride, also known as

*minocycline*, is a

> member of the broad spectrum tetracycline

> antibioticshttp://en.wikipedia.org/wiki/Tetracycline_antibiotics>,

> and has a broader spectrum than the other members. As a result of

its long

> half-life it generally has serum

http://en.wikipedia.org/wiki/Serum> levels

> 2-4 times that of most other tetracyclines (150 mg giving 16 times

the

> activity levels compared to 250 mg of

> tetracyclinehttp://en.wikipedia.org/wiki/Tetracycline>at 24-48

> hours). It

> is marketed under several trade names, including *Minomycin*,

*Minocin*, *

> Arestin*, and *Dynacin*. *Part 2*

> Sarcoidosis Treatment Options

>

> From: *

> http://www.clevelandclinic.org/health/health-

info/docs/3500/3574.asp?index=11867

> *http://www.clevelandclinic.org/health/health-

info/docs/3500/3574.asp?index=11867>

>

> *How is sarcoidosis treated?

> *There is no cure for sarcoidosis, but the disease may get better

on its own

> over time. Many people with sarcoidosis have mild symptoms and do

not

> require any treatment at all. Treatment, when it is needed,

generally falls

> into two categories—maintenance of good health practices and drug

treatment.

> Good health practices include:

>

> - Getting regular check-ups with your health care provider

> - Eating a well-balanced diet with a variety of fresh fruits and

> vegetables

> - Drinking 8 to 10, 8-ounce glasses of water a day

> - Getting 6 to 8 hours of sleep each night

> - Exercising regularly, and managing and maintaining your weight

> - Quitting smoking

> - Avoiding exposure to dust, chemicals, fumes, gases, toxic

inhalants,

> and other substances that can harm your lungs

> - Avoiding excessive amounts of calcium-rich foods (such as

dairy

> products, oranges, canned salmon with bones), vitamin D and

sunlight. Daily

> sunbathing is an example of excessive sunlight and should be

avoided;

> sunlight received from activities of everyday living is

acceptable. (The

> advice in this bullet point is limited to patients with high

blood or urine

> levels of calcium.)

>

> Drug treatments are used to relieve symptoms, reduce the

inflammation of the

> affected tissues, reduce the impact of granuloma development, and

prevent

> the development of lung fibrosis and other irreversible organ

damage.

>

> Corticosteroids are particularly effective in reducing

inflammation, and are

> typically the first drugs used in treating sarcoidosis. The oral

> corticosteroid prednisone is the most commonly used corticosteroid.

>

> For patients with no symptoms or very mild symptoms, the side

effects of

> prednisone therapy may outweigh possible benefits, so treatment is

usually

> not recommended for this disease stage. Corticosteroids are more

typically

> reserved for patients with disease that is of moderate severity.

Symptoms,

> especially cough and shortness of breath, generally improve with

steroid

> therapy.

>

> Corticosteroid treatment controls the disease rather than cures

it. The

> symptoms respond to treatment in the majority of patients. A

relatively high

> dose is usually prescribed at first, followed by a slow taper to

the lowest

> effective dose. Fortunately, disease relapses--when they occur--

usually

> respond to retreatment with steroids. Patients who improve and

remain stable

> for more than 1 year after stopping treatment have a low rate of

relapse.

>

> Results of some long-term studies indicate patients can expect

about a 10

> percent improvement in symptoms up to 5 years after quitting

corticosteroid

> treatment. Whether or not this is a large enough benefit to

outweigh the

> risks of corticosteroid treatment remains an issue debated by

doctors. If

> steroids are prescribed, the patient should see his or her doctor

at regular

> intervals so that the disease and side effects of treatment can be

> monitored. The common side effects of corticosteroids include:

>

> - Excessive weight gain

> - Insomnia

> - Acne

> - Diabetes in susceptible people

> - High blood pressure

> - Glaucoma

> - Cataracts

> - Osteoporosis

> - Depression and emotional irritability

> - Skin bruising

> - Increased risk of infections

>

> *

>

> Are there alternative treatments to corticosteroids?

> *Other treatments are available for patients who cannot tolerate

steroids

> either because they are contraindicated or because side effects

cannot be

> tolerated. Patients whose disease does not respond to steroids or

who wish

> to lower the dose of steroids and use another drug in combination

have

> additional treatment options as well.

>

> It is important to keep in mind that all of the following

treatments have

> been used and studied much less extensively than corticosteroids.

Doctors

> with special expertise in sarcoidosis should manage patients who

are on

> regular prednisone therapy or any of the following alternatives:

>

> - *Methotrexate or azathioprine*: These medications, most often

used

> in rheumatoid arthritis, have been used in place of or in

addition to

> corticosteroids to treat pulmonary sarcoidosis and chronic

sarcoidosis.

> Methotrexate, given as pills usually once per week, has a small

chance of

> causing irritation or damage to the liver.

> - *Hydrochloroquine and chloroquine:* These oral antimalarial

drugs

> have been used to treat sarcoidosis of the skin, lungs, and

nervous system.

> They are used to treat the hypercalcemia seen with sarcoidosis.

Patients on

> these drugs need occasional monitoring of their eyes by an

ophthalmologist.

> - *Cyclophosphamide or chlorambucil*: These medications are

usually

> used for disease that has reached the severe stage and after

other therapies

> have failed. Cyclophosphamide is associated with many severe

side effects

> including bone marrow suppression and kidney damage.

> - *Pentoxifylline and thalidomide:* Recent studies have reported

> beneficial effects of these drugs in treatment-resistant lupus

pernio.

> - *Inflixamab:* This medication, which is given as an

intravenous

> injection once per month, is currently being evaluated for use

in

> sarcoidosis in several formal clinical trials. Patients

enrolled in these

> trials have had either chronic pulmonary sarcoidosis or

sarcoidosis that has

> failed to respond to other medications.

> - *Colchicine*: This oral medication, commonly used to treat

gout, is

> sometimes prescribed for the treatment of sarcoid arthritis.

> - *Various NSAIDs* (nonsteroidal anti-inflammatory drugs [such

as

> ibuprofen or aspirin]): These drugs may help reduce acute

inflammation and

> relieve arthritis and fever. They are not recommended for the

treatment of

> sarcoidosis affecting the lungs.

> - *Topical corticosteroids:* These agents could be used in

several

> preparations (for example, eye drops, skin creams, respiratory

sprays) for

> mild local symptoms of sarcoidosis. Although they are a lot

safer than

> steroid pills, they are also less effective.

> - *Organ transplantation:* This option is rarely considered in

> patients with end-stage disease, where the kidneys or lungs

have failed.

>

> *

>

> When is treatment started?

> *Many questions exist regarding the appropriate timing and

duration of

> treatment for sarcoidosis. The decision to begin treatment

generally depends

> on the organ system involved and the severity of disease.

>

> There are several situations, however, under which some form of

treatment is

> usually given. These include patients with neurological, heart, and

> sight-threatening disease; those with serious pulmonary symptoms

and/or

> worsening lung function; and those with kidney involvement--

specifically,

> hypercalcemia. Because of the serious effects that can occur when

these

> systems are involved, treatment is started even if symptoms are

mild.

>

> Other indications for which treatment could be considered include

an

> inability to work as a result of fever, weakness, fatigue, joint

pain,

> nervous system changes, respiratory symptoms (especially shortness

of breath

> and cough), and disfiguring skin disease.

> *

>

> What can happen as the disease progresses?

> *In many people with sarcoidosis, the disease appears briefly and

then

> disappears without the person even knowing they have the disease.

When

> sarcoidosis seriously affects the ability of the lungs to function

normally,

> patients may require supplemental oxygen (supplied in a small

portable

> oxygen tank and administered through plastic tubing clipped to the

nose) to

> help them breathe.

>

> Twenty percent to 30 percent of people have some permanent lung

damage. For

> 10 percent to 30 percent, sarcoidosis is a chronic condition, with

symptom

> progression despite treatment that has continued for more than 2

years. In

> some people, the disease may result in the deterioration of the

affected

> organ.

>

> When the granulomas or fibrosis seriously affect the function of a

vital

> organ--such as the lungs, heart, nervous system, liver, or

> kidneys--sarcoidosis can be fatal. Death occurs in 1 to 6 percent

of all

> patients with sarcoidosis and in 5 percent to 10 percent of

patients with

> chronic progressive disease. The leading cause of sarcoidosis-

related death

> in the United States is irreversible pulmonary fibrosis.

>

> © Copyright 1995-2006 The Cleveland Clinic Foundation. All

rights reserved

>

[Guest guest]

Thanks Ron...this is great...

I hope to stay wake for the chat tonight...been a long day....

TTFN

Ruth

>

> A MUST READ!!!

>

>

>

> ---------- Forwarded message ----------

> From: concepts@...

> Date: Jul 14, 2006 12:54 AM

> Subject: Sarcoidosis Treatment Options

> To: carollcameron@...

>

> I. Part 1 Background for Minocycline: Antibiotic therapy has been

reported

> to be effective for lung, lymph and cutaneous manifestations of

sarcoidosis

> [5] http://en.wikipedia.org/wiki/Sarcoidosis#_note-4>

> [6]http://en.wikipedia.org/wiki/Sarcoidosis#_note-5>but this

therapy

> is not currently the standard of care. On March 28, 2006,

> the FDA Office of Orphan Products Development designated

> Minocyclinehttp://en.wikipedia.org/wiki/Minocycline>in the

treatment

> of sarcoidosis,

> [1] http://autoimmunityresearch.org/opd-mino-designation-

3apr2006.pdf> with

> the 'Autoimmunity Research Foundation'[2]

> http://autoimmunityresearch.org/>designated as the sponsor.

>

> Minocycline: Minocycline hydrochloride, also known as

*minocycline*, is a

> member of the broad spectrum tetracycline

> antibioticshttp://en.wikipedia.org/wiki/Tetracycline_antibiotics>,

> and has a broader spectrum than the other members. As a result of

its long

> half-life it generally has serum

http://en.wikipedia.org/wiki/Serum> levels

> 2-4 times that of most other tetracyclines (150 mg giving 16 times

the

> activity levels compared to 250 mg of

> tetracyclinehttp://en.wikipedia.org/wiki/Tetracycline>at 24-48

> hours). It

> is marketed under several trade names, including *Minomycin*,

*Minocin*, *

> Arestin*, and *Dynacin*. *Part 2*

> Sarcoidosis Treatment Options

>

> From: *

> http://www.clevelandclinic.org/health/health-

info/docs/3500/3574.asp?index=11867

> *http://www.clevelandclinic.org/health/health-

info/docs/3500/3574.asp?index=11867>

>

> *How is sarcoidosis treated?

> *There is no cure for sarcoidosis, but the disease may get better

on its own

> over time. Many people with sarcoidosis have mild symptoms and do

not

> require any treatment at all. Treatment, when it is needed,

generally falls

> into two categories—maintenance of good health practices and drug

treatment.

> Good health practices include:

>

> - Getting regular check-ups with your health care provider

> - Eating a well-balanced diet with a variety of fresh fruits and

> vegetables

> - Drinking 8 to 10, 8-ounce glasses of water a day

> - Getting 6 to 8 hours of sleep each night

> - Exercising regularly, and managing and maintaining your weight

> - Quitting smoking

> - Avoiding exposure to dust, chemicals, fumes, gases, toxic

inhalants,

> and other substances that can harm your lungs

> - Avoiding excessive amounts of calcium-rich foods (such as

dairy

> products, oranges, canned salmon with bones), vitamin D and

sunlight. Daily

> sunbathing is an example of excessive sunlight and should be

avoided;

> sunlight received from activities of everyday living is

acceptable. (The

> advice in this bullet point is limited to patients with high

blood or urine

> levels of calcium.)

>

> Drug treatments are used to relieve symptoms, reduce the

inflammation of the

> affected tissues, reduce the impact of granuloma development, and

prevent

> the development of lung fibrosis and other irreversible organ

damage.

>

> Corticosteroids are particularly effective in reducing

inflammation, and are

> typically the first drugs used in treating sarcoidosis. The oral

> corticosteroid prednisone is the most commonly used corticosteroid.

>

> For patients with no symptoms or very mild symptoms, the side

effects of

> prednisone therapy may outweigh possible benefits, so treatment is

usually

> not recommended for this disease stage. Corticosteroids are more

typically

> reserved for patients with disease that is of moderate severity.

Symptoms,

> especially cough and shortness of breath, generally improve with

steroid

> therapy.

>

> Corticosteroid treatment controls the disease rather than cures

it. The

> symptoms respond to treatment in the majority of patients. A

relatively high

> dose is usually prescribed at first, followed by a slow taper to

the lowest

> effective dose. Fortunately, disease relapses--when they occur--

usually

> respond to retreatment with steroids. Patients who improve and

remain stable

> for more than 1 year after stopping treatment have a low rate of

relapse.

>

> Results of some long-term studies indicate patients can expect

about a 10

> percent improvement in symptoms up to 5 years after quitting

corticosteroid

> treatment. Whether or not this is a large enough benefit to

outweigh the

> risks of corticosteroid treatment remains an issue debated by

doctors. If

> steroids are prescribed, the patient should see his or her doctor

at regular

> intervals so that the disease and side effects of treatment can be

> monitored. The common side effects of corticosteroids include:

>

> - Excessive weight gain

> - Insomnia

> - Acne

> - Diabetes in susceptible people

> - High blood pressure

> - Glaucoma

> - Cataracts

> - Osteoporosis

> - Depression and emotional irritability

> - Skin bruising

> - Increased risk of infections

>

> *

>

> Are there alternative treatments to corticosteroids?

> *Other treatments are available for patients who cannot tolerate

steroids

> either because they are contraindicated or because side effects

cannot be

> tolerated. Patients whose disease does not respond to steroids or

who wish

> to lower the dose of steroids and use another drug in combination

have

> additional treatment options as well.

>

> It is important to keep in mind that all of the following

treatments have

> been used and studied much less extensively than corticosteroids.

Doctors

> with special expertise in sarcoidosis should manage patients who

are on

> regular prednisone therapy or any of the following alternatives:

>

> - *Methotrexate or azathioprine*: These medications, most often

used

> in rheumatoid arthritis, have been used in place of or in

addition to

> corticosteroids to treat pulmonary sarcoidosis and chronic

sarcoidosis.

> Methotrexate, given as pills usually once per week, has a small

chance of

> causing irritation or damage to the liver.

> - *Hydrochloroquine and chloroquine:* These oral antimalarial

drugs

> have been used to treat sarcoidosis of the skin, lungs, and

nervous system.

> They are used to treat the hypercalcemia seen with sarcoidosis.

Patients on

> these drugs need occasional monitoring of their eyes by an

ophthalmologist.

> - *Cyclophosphamide or chlorambucil*: These medications are

usually

> used for disease that has reached the severe stage and after

other therapies

> have failed. Cyclophosphamide is associated with many severe

side effects

> including bone marrow suppression and kidney damage.

> - *Pentoxifylline and thalidomide:* Recent studies have reported

> beneficial effects of these drugs in treatment-resistant lupus

pernio.

> - *Inflixamab:* This medication, which is given as an

intravenous

> injection once per month, is currently being evaluated for use

in

> sarcoidosis in several formal clinical trials. Patients

enrolled in these

> trials have had either chronic pulmonary sarcoidosis or

sarcoidosis that has

> failed to respond to other medications.

> - *Colchicine*: This oral medication, commonly used to treat

gout, is

> sometimes prescribed for the treatment of sarcoid arthritis.

> - *Various NSAIDs* (nonsteroidal anti-inflammatory drugs [such

as

> ibuprofen or aspirin]): These drugs may help reduce acute

inflammation and

> relieve arthritis and fever. They are not recommended for the

treatment of

> sarcoidosis affecting the lungs.

> - *Topical corticosteroids:* These agents could be used in

several

> preparations (for example, eye drops, skin creams, respiratory

sprays) for

> mild local symptoms of sarcoidosis. Although they are a lot

safer than

> steroid pills, they are also less effective.

> - *Organ transplantation:* This option is rarely considered in

> patients with end-stage disease, where the kidneys or lungs

have failed.

>

> *

>

> When is treatment started?

> *Many questions exist regarding the appropriate timing and

duration of

> treatment for sarcoidosis. The decision to begin treatment

generally depends

> on the organ system involved and the severity of disease.

>

> There are several situations, however, under which some form of

treatment is

> usually given. These include patients with neurological, heart, and

> sight-threatening disease; those with serious pulmonary symptoms

and/or

> worsening lung function; and those with kidney involvement--

specifically,

> hypercalcemia. Because of the serious effects that can occur when

these

> systems are involved, treatment is started even if symptoms are

mild.

>

> Other indications for which treatment could be considered include

an

> inability to work as a result of fever, weakness, fatigue, joint

pain,

> nervous system changes, respiratory symptoms (especially shortness

of breath

> and cough), and disfiguring skin disease.

> *

>

> What can happen as the disease progresses?

> *In many people with sarcoidosis, the disease appears briefly and

then

> disappears without the person even knowing they have the disease.

When

> sarcoidosis seriously affects the ability of the lungs to function

normally,

> patients may require supplemental oxygen (supplied in a small

portable

> oxygen tank and administered through plastic tubing clipped to the

nose) to

> help them breathe.

>

> Twenty percent to 30 percent of people have some permanent lung

damage. For

> 10 percent to 30 percent, sarcoidosis is a chronic condition, with

symptom

> progression despite treatment that has continued for more than 2

years. In

> some people, the disease may result in the deterioration of the

affected

> organ.

>

> When the granulomas or fibrosis seriously affect the function of a

vital

> organ--such as the lungs, heart, nervous system, liver, or

> kidneys--sarcoidosis can be fatal. Death occurs in 1 to 6 percent

of all

> patients with sarcoidosis and in 5 percent to 10 percent of

patients with

> chronic progressive disease. The leading cause of sarcoidosis-

related death

> in the United States is irreversible pulmonary fibrosis.

>

> © Copyright 1995-2006 The Cleveland Clinic Foundation. All

rights reserved

>

[Guest guest]

Thanks Ron...this is great...

I hope to stay wake for the chat tonight...been a long day....

TTFN

Ruth

>

> A MUST READ!!!

>

>

>

> ---------- Forwarded message ----------

> From: concepts@...

> Date: Jul 14, 2006 12:54 AM

> Subject: Sarcoidosis Treatment Options

> To: carollcameron@...

>

> I. Part 1 Background for Minocycline: Antibiotic therapy has been

reported

> to be effective for lung, lymph and cutaneous manifestations of

sarcoidosis

> [5] http://en.wikipedia.org/wiki/Sarcoidosis#_note-4>

> [6]http://en.wikipedia.org/wiki/Sarcoidosis#_note-5>but this

therapy

> is not currently the standard of care. On March 28, 2006,

> the FDA Office of Orphan Products Development designated

> Minocyclinehttp://en.wikipedia.org/wiki/Minocycline>in the

treatment

> of sarcoidosis,

> [1] http://autoimmunityresearch.org/opd-mino-designation-

3apr2006.pdf> with

> the 'Autoimmunity Research Foundation'[2]

> http://autoimmunityresearch.org/>designated as the sponsor.

>

> Minocycline: Minocycline hydrochloride, also known as

*minocycline*, is a

> member of the broad spectrum tetracycline

> antibioticshttp://en.wikipedia.org/wiki/Tetracycline_antibiotics>,

> and has a broader spectrum than the other members. As a result of

its long

> half-life it generally has serum

http://en.wikipedia.org/wiki/Serum> levels

> 2-4 times that of most other tetracyclines (150 mg giving 16 times

the

> activity levels compared to 250 mg of

> tetracyclinehttp://en.wikipedia.org/wiki/Tetracycline>at 24-48

> hours). It

> is marketed under several trade names, including *Minomycin*,

*Minocin*, *

> Arestin*, and *Dynacin*. *Part 2*

> Sarcoidosis Treatment Options

>

> From: *

> http://www.clevelandclinic.org/health/health-

info/docs/3500/3574.asp?index=11867

> *http://www.clevelandclinic.org/health/health-

info/docs/3500/3574.asp?index=11867>

>

> *How is sarcoidosis treated?

> *There is no cure for sarcoidosis, but the disease may get better

on its own

> over time. Many people with sarcoidosis have mild symptoms and do

not

> require any treatment at all. Treatment, when it is needed,

generally falls

> into two categories—maintenance of good health practices and drug

treatment.

> Good health practices include:

>

> - Getting regular check-ups with your health care provider

> - Eating a well-balanced diet with a variety of fresh fruits and

> vegetables

> - Drinking 8 to 10, 8-ounce glasses of water a day

> - Getting 6 to 8 hours of sleep each night

> - Exercising regularly, and managing and maintaining your weight

> - Quitting smoking

> - Avoiding exposure to dust, chemicals, fumes, gases, toxic

inhalants,

> and other substances that can harm your lungs

> - Avoiding excessive amounts of calcium-rich foods (such as

dairy

> products, oranges, canned salmon with bones), vitamin D and

sunlight. Daily

> sunbathing is an example of excessive sunlight and should be

avoided;

> sunlight received from activities of everyday living is

acceptable. (The

> advice in this bullet point is limited to patients with high

blood or urine

> levels of calcium.)

>

> Drug treatments are used to relieve symptoms, reduce the

inflammation of the

> affected tissues, reduce the impact of granuloma development, and

prevent

> the development of lung fibrosis and other irreversible organ

damage.

>

> Corticosteroids are particularly effective in reducing

inflammation, and are

> typically the first drugs used in treating sarcoidosis. The oral

> corticosteroid prednisone is the most commonly used corticosteroid.

>

> For patients with no symptoms or very mild symptoms, the side

effects of

> prednisone therapy may outweigh possible benefits, so treatment is

usually

> not recommended for this disease stage. Corticosteroids are more

typically

> reserved for patients with disease that is of moderate severity.

Symptoms,

> especially cough and shortness of breath, generally improve with

steroid

> therapy.

>

> Corticosteroid treatment controls the disease rather than cures

it. The

> symptoms respond to treatment in the majority of patients. A

relatively high

> dose is usually prescribed at first, followed by a slow taper to

the lowest

> effective dose. Fortunately, disease relapses--when they occur--

usually

> respond to retreatment with steroids. Patients who improve and

remain stable

> for more than 1 year after stopping treatment have a low rate of

relapse.

>

> Results of some long-term studies indicate patients can expect

about a 10

> percent improvement in symptoms up to 5 years after quitting

corticosteroid

> treatment. Whether or not this is a large enough benefit to

outweigh the

> risks of corticosteroid treatment remains an issue debated by

doctors. If

> steroids are prescribed, the patient should see his or her doctor

at regular

> intervals so that the disease and side effects of treatment can be

> monitored. The common side effects of corticosteroids include:

>

> - Excessive weight gain

> - Insomnia

> - Acne

> - Diabetes in susceptible people

> - High blood pressure

> - Glaucoma

> - Cataracts

> - Osteoporosis

> - Depression and emotional irritability

> - Skin bruising

> - Increased risk of infections

>

> *

>

> Are there alternative treatments to corticosteroids?

> *Other treatments are available for patients who cannot tolerate

steroids

> either because they are contraindicated or because side effects

cannot be

> tolerated. Patients whose disease does not respond to steroids or

who wish

> to lower the dose of steroids and use another drug in combination

have

> additional treatment options as well.

>

> It is important to keep in mind that all of the following

treatments have

> been used and studied much less extensively than corticosteroids.

Doctors

> with special expertise in sarcoidosis should manage patients who

are on

> regular prednisone therapy or any of the following alternatives:

>

> - *Methotrexate or azathioprine*: These medications, most often

used

> in rheumatoid arthritis, have been used in place of or in

addition to

> corticosteroids to treat pulmonary sarcoidosis and chronic

sarcoidosis.

> Methotrexate, given as pills usually once per week, has a small

chance of

> causing irritation or damage to the liver.

> - *Hydrochloroquine and chloroquine:* These oral antimalarial

drugs

> have been used to treat sarcoidosis of the skin, lungs, and

nervous system.

> They are used to treat the hypercalcemia seen with sarcoidosis.

Patients on

> these drugs need occasional monitoring of their eyes by an

ophthalmologist.

> - *Cyclophosphamide or chlorambucil*: These medications are

usually

> used for disease that has reached the severe stage and after

other therapies

> have failed. Cyclophosphamide is associated with many severe

side effects

> including bone marrow suppression and kidney damage.

> - *Pentoxifylline and thalidomide:* Recent studies have reported

> beneficial effects of these drugs in treatment-resistant lupus

pernio.

> - *Inflixamab:* This medication, which is given as an

intravenous

> injection once per month, is currently being evaluated for use

in

> sarcoidosis in several formal clinical trials. Patients

enrolled in these

> trials have had either chronic pulmonary sarcoidosis or

sarcoidosis that has

> failed to respond to other medications.

> - *Colchicine*: This oral medication, commonly used to treat

gout, is

> sometimes prescribed for the treatment of sarcoid arthritis.

> - *Various NSAIDs* (nonsteroidal anti-inflammatory drugs [such

as

> ibuprofen or aspirin]): These drugs may help reduce acute

inflammation and

> relieve arthritis and fever. They are not recommended for the

treatment of

> sarcoidosis affecting the lungs.

> - *Topical corticosteroids:* These agents could be used in

several

> preparations (for example, eye drops, skin creams, respiratory

sprays) for

> mild local symptoms of sarcoidosis. Although they are a lot

safer than

> steroid pills, they are also less effective.

> - *Organ transplantation:* This option is rarely considered in

> patients with end-stage disease, where the kidneys or lungs

have failed.

>

> *

>

> When is treatment started?

> *Many questions exist regarding the appropriate timing and

duration of

> treatment for sarcoidosis. The decision to begin treatment

generally depends

> on the organ system involved and the severity of disease.

>

> There are several situations, however, under which some form of

treatment is

> usually given. These include patients with neurological, heart, and

> sight-threatening disease; those with serious pulmonary symptoms

and/or

> worsening lung function; and those with kidney involvement--

specifically,

> hypercalcemia. Because of the serious effects that can occur when

these

> systems are involved, treatment is started even if symptoms are

mild.

>

> Other indications for which treatment could be considered include

an

> inability to work as a result of fever, weakness, fatigue, joint

pain,

> nervous system changes, respiratory symptoms (especially shortness

of breath

> and cough), and disfiguring skin disease.

> *

>

> What can happen as the disease progresses?

> *In many people with sarcoidosis, the disease appears briefly and

then

> disappears without the person even knowing they have the disease.

When

> sarcoidosis seriously affects the ability of the lungs to function

normally,

> patients may require supplemental oxygen (supplied in a small

portable

> oxygen tank and administered through plastic tubing clipped to the

nose) to

> help them breathe.

>

> Twenty percent to 30 percent of people have some permanent lung

damage. For

> 10 percent to 30 percent, sarcoidosis is a chronic condition, with

symptom

> progression despite treatment that has continued for more than 2

years. In

> some people, the disease may result in the deterioration of the

affected

> organ.

>

> When the granulomas or fibrosis seriously affect the function of a

vital

> organ--such as the lungs, heart, nervous system, liver, or

> kidneys--sarcoidosis can be fatal. Death occurs in 1 to 6 percent

of all

> patients with sarcoidosis and in 5 percent to 10 percent of

patients with

> chronic progressive disease. The leading cause of sarcoidosis-

related death

> in the United States is irreversible pulmonary fibrosis.

>

> © Copyright 1995-2006 The Cleveland Clinic Foundation. All

rights reserved

>

[Guest guest]

Thanks Tracie, I recognized the " info " but I didn't

want to hurt anyone's feelings by saying something.

That site gets so brutal with anyone having to use

other medications, and I'm sorry but if this was the

cure we'd all be fixed. I have doctors who have been

aware of this " new " protocal and they are not

impressed. Sorry, If I have written anything

inappropriate in this email, just delete it. Thanks

again, Connie

--- tiodaat@... wrote:

> In a message dated 7/16/06 6:33:39 PM Pacific

> Daylight Time,

> anewronald@... writes:

>

>

> > 'Autoimmunity Research Foundation

>

> Ron,

> This is Trevor Marshall's protocol. At least in the

> article, he lists the

> other drugs being used. I know we have some of his

> previous enrollees on our

> site.

> Please, if any of you want answers about his stuff--

> ask them. It is not a

> program we can promote.

>

> Thank you,

> Tracie

>

__________________________________________________

[Guest guest]

Thanks Tracie, I recognized the " info " but I didn't

want to hurt anyone's feelings by saying something.

That site gets so brutal with anyone having to use

other medications, and I'm sorry but if this was the

cure we'd all be fixed. I have doctors who have been

aware of this " new " protocal and they are not

impressed. Sorry, If I have written anything

inappropriate in this email, just delete it. Thanks

again, Connie

--- tiodaat@... wrote:

> In a message dated 7/16/06 6:33:39 PM Pacific

> Daylight Time,

> anewronald@... writes:

>

>

> > 'Autoimmunity Research Foundation

>

> Ron,

> This is Trevor Marshall's protocol. At least in the

> article, he lists the

> other drugs being used. I know we have some of his

> previous enrollees on our

> site.

> Please, if any of you want answers about his stuff--

> ask them. It is not a

> program we can promote.

>

> Thank you,

> Tracie

>

__________________________________________________

[Guest guest]

Thanks Tracie, I recognized the " info " but I didn't

want to hurt anyone's feelings by saying something.

That site gets so brutal with anyone having to use

other medications, and I'm sorry but if this was the

cure we'd all be fixed. I have doctors who have been

aware of this " new " protocal and they are not

impressed. Sorry, If I have written anything

inappropriate in this email, just delete it. Thanks

again, Connie

--- tiodaat@... wrote:

> In a message dated 7/16/06 6:33:39 PM Pacific

> Daylight Time,

> anewronald@... writes:

>

>

> > 'Autoimmunity Research Foundation

>

> Ron,

> This is Trevor Marshall's protocol. At least in the

> article, he lists the

> other drugs being used. I know we have some of his

> previous enrollees on our

> site.

> Please, if any of you want answers about his stuff--

> ask them. It is not a

> program we can promote.

>

> Thank you,

> Tracie

>

__________________________________________________

[Guest guest]

Connie,

I am so very glad that you have shared your experience. Once in awhile, we get some of Trevor's people that start sending our members private emails and scamming our list.

The only thing that any of YOU can do is to report them to Yahoogroups if they do contact you and harrass you about being a part of this or any other group. It is against Yahoogroup laws--and it has to be reported by the person recieving the email via their private address.

I know that we all want a cure.

Boy do I know we want a cure. and you are right-- if it worked, we'd be beating down the doors. His protocol has been around for the last 6 or 7 years at least-- and most our MD's do know about it-- but don't want any part of it.

Thanks again,

Tracie

NS Co-owner/moderator