Re: Sjogren's and prednisone

[Guest guest]

Barbara, I have Sjogren's that was actually diagnosed after my PF by a month. From a HRCT in July of '08 to another in Nov. '08, my lungs actually improved, inflammation-wise, on 60 mgs. of prednisone. In Feb. of this year, I had tapered down to 5mgs, then 2. after a flare and coughing, I am now back on 10 mgs. I say hang in there, even with nasty side-effects. I wish I hadn't been so eager to get off the meds. Are you also on Imuran? Did you have a biopsy? my doctor says no reason to put me through that knowing autoimmune is obvious cause. Of course, he is same doctor that told me about a "new little test" called the six-minute walk just five months ago. This is a major teaching hospital in Dallas and his specialty is pulmonary fibrosis! I may one day take Bruce's route and go to Chicago, Duke, or Emory to get a second opinion.Elisa age 53

NSIP/LIP Sjogren's, Raynaud's, April '08Sent from my iPhone

Thank you very much Beth. I appreciate you!

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support Sent: Saturday, August 15, 2009 2:12:41 PMSubject: Re: Sjogren's and prednisone

Barb,

This is the best "nutshell" info on Sjorgren's and prednisone that I've seen. I copied and pasted it for you below. Remember when you're taking prednisone for the Sjorgren's you are taking on the inflammation in your body. Inflammation is the enemy, that's what causes the damage whether it's your kidneys, your lungs, liver etc. There are other weapons in the toolbox but prednisone is an important one.

We had a member here, Joyce Dalton who had Sjorgren's among other things. She used prednisone and every other trick in the book to keep the disease at bay. She lived much much longer than any of her doctors expected her to.

Whether it will help you is not something you can necessarily predict. But prednisone is known to be effective against these auto-immune diseases where it's effectiveness in the case of IPF or a non-inflammatory based pulmonary fibrosis is much lower.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

We all know that Sjogren's is an inflammatory autoimmune condition, which means that our bodies and specifically white blood cells have mistakenly identified our own tissues as foreign substances. These cranky leukocytes then launch an attack on our own tissues and in doing so, create inflammation. You can refresh your memory about inflammation and it's nasty effects here in this excellent article by the

Cleveland

Clinic.

In Sjogren's Syndrome, this inflammation can affect the saliva glands, the lacrimal glands in the eyelids, and other mucous-secreting glands, resulting in the hallmark dry eye and dry mouth symptoms. Other body-wide symptoms such as significant fatigue and joint pain are caused by inflammation.

So why is an understanding of inflammation important in a discussion about prednisone? Because this medication can be a significant tool used among several other medications to reduce inflammation.

An anti-inflammatory toolbox can contain several medications and strategies:

pacing activities with rest periods adding omega 3 fatty acids to the diet maintaining a healthy body weight non steroidal anti inflammatory drugs such as ibuprofen, asprin, and naproxyn

anti malarial drugs such as hydroxychloroquine

other medications such as methotrexate

corticosteriods such as prednisone

Corticosteroids, or drugs that closely resemble our own hormone cortisol, are a relatively new addition to the anti-inflammatory toolbox, explained here on About.com:

Corticosteroids or glucocorticoids, often just called "steroids", where once thought to be almost miraculous. In 1948, at the Mayo Clinic in Rochester, Minnesota a group of arthritis patients were given daily injections of a corticosteroid. The results were so striking and the improvement so dramatic that it was thought that the "cure" for arthritis had been discovered. However, as the use of corticosteroids expanded over the years, side effects emerged and it was realized that high doses given over prolonged periods of time turned steroids into

"scare-oids"

..

Prednisone was found to have a dramatic anti-inflammatory effect, a valuable asset in dealing with significant and systemic symptoms in Sjogren's, such as lung, kidney, liver, and gastro- intestinal inflammation.

Used judiciously, corticosteroids are a necessary long-term medication for many Sjoggies. However, due to the numerous side effects of these drugs, careful monitoring is required when prednisone is taken over long periods of time or at high dosages.

Others, like myself, take prednisone only when my symptoms require it. In these instances, Dr. S. prescribes a "burst and taper" dosage, meaning an inital dose followed by gradually smaller amounts of the drug until the medication is discontinued.

The side effects of corticosteroids are the limiting factor in prescribing this powerful drug. Some of the side effects include:

skin thinning

acne

increased hair growth, or hirsutism

cataracts

premature atherosclerosis

gastritis

menstrual disturbances

osteoporosis

muscle weakness

diabetes mellitus

high blood pressure

increased risk of infection

(Information taken from The New Sjogren's Syndrome Handbook edited by J. Wallace, MD, pgs 131-132)

MayoClinic.com also has a very good article, found here, that explains prednisone basics.

Messages in this topic (3)

__________________________________________________

[Guest guest]

Elisa:

I have not had a biopsy; no one has suggested one and I would not be eager to have one anyway. I am glad to hear that your lungs have improved with treatment; it gives me hope and makes me happy for you.

I am not on Imuran; the docs thought they'd start out with the prednisone and see what happens. I have an appt in a couple of days with the Rheumy, who is to be the "closely following" doc. I don't know what can be learned after two weeks on this stuff, but am eager to find out. I pretty much have headaches for much of the day, and now am going thru afternoon "manic" periods. And I seem to be hungrier. Auggghhhhh!

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: "Breathe-Support " <Breathe-Support >Sent: Sunday, August 16, 2009 11:22:20 AMSubject: Re: Sjogren's and prednisone

Barbara,

I have Sjogren's that was actually diagnosed after my PF by a month. From a HRCT in July of '08 to another in Nov. '08, my lungs actually improved, inflammation- wise, on 60 mgs. of prednisone. In Feb. of this year, I had tapered down to 5mgs, then 2. after a flare and coughing, I am now back on 10 mgs. I say hang in there, even with nasty side-effects. I wish I hadn't been so eager to get off the meds. Are you also on Imuran? Did you have a biopsy? my doctor says no reason to put me through that knowing autoimmune is obvious cause. Of course, he is same doctor that told me about a "new little test" called the six-minute walk just five months ago. This is a major teaching hospital in Dallas and his specialty is pulmonary fibrosis! I may one day take Bruce's route and go to Chicago, Duke, or Emory to get a second opinion.

Elisa age 53 NSIP/LIP Sjogren's, Raynaud's, April '08Sent from my iPhone

On Aug 15, 2009, at 3:11 PM, Barbara McD <bamny (AT) yahoo (DOT) com> wrote:

Thank you very much Beth. I appreciate you!

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, August 15, 2009 2:12:41 PMSubject: Re: Sjogren's and prednisone

Barb,

This is the best "nutshell" info on Sjorgren's and prednisone that I've seen. I copied and pasted it for you below. Remember when you're taking prednisone for the Sjorgren's you are taking on the inflammation in your body. Inflammation is the enemy, that's what causes the damage whether it's your kidneys, your lungs, liver etc. There are other weapons in the toolbox but prednisone is an important one.

We had a member here, Joyce Dalton who had Sjorgren's among other things. She used prednisone and every other trick in the book to keep the disease at bay. She lived much much longer than any of her doctors expected her to.

Whether it will help you is not something you can necessarily predict. But prednisone is known to be effective against these auto-immune diseases where it's effectiveness in the case of IPF or a non-inflammatory based pulmonary fibrosis is much lower.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

We all know that Sjogren's is an inflammatory autoimmune condition, which means that our bodies and specifically white blood cells have mistakenly identified our own tissues as foreign substances. These cranky leukocytes then launch an attack on our own tissues and in doing so, create inflammation. You can refresh your memory about inflammation and it's nasty effects here in this excellent article by the Cleveland

Clinic.

In Sjogren's Syndrome, this inflammation can affect the saliva glands, the lacrimal glands in the eyelids, and other mucous-secreting glands, resulting in the hallmark dry eye and dry mouth symptoms. Other body-wide symptoms such as significant fatigue and joint pain are caused by inflammation.

So why is an understanding of inflammation important in a discussion about prednisone? Because this medication can be a significant tool used among several other medications to reduce inflammation.

An anti-inflammatory toolbox can contain several medications and strategies:

pacing activities with rest periods

adding omega 3 fatty acids to the diet

maintaining a healthy body weight

non steroidal anti inflammatory drugs such as ibuprofen, asprin, and naproxyn

anti malarial drugs such as hydroxychloroquine

other medications such as methotrexate

corticosteriods such as prednisone

Corticosteroids, or drugs that closely resemble our own hormone cortisol, are a relatively new addition to the anti-inflammatory toolbox, explained here on About.com:

Corticosteroids or glucocorticoids, often just called "steroids", where once thought to be almost miraculous. In 1948, at the Mayo Clinic in Rochester, Minnesota a group of arthritis patients were given daily injections of a corticosteroid. The results were so striking and the improvement so dramatic that it was thought that the "cure" for arthritis had been discovered. However, as the use of corticosteroids expanded over the years, side effects emerged and it was realized that high doses given over prolonged periods of time turned steroids into "scare-oids"

..

Prednisone was found to have a dramatic anti-inflammatory effect, a valuable asset in dealing with significant and systemic symptoms in Sjogren's, such as lung, kidney, liver, and gastro- intestinal inflammation.

Used judiciously, corticosteroids are a necessary long-term medication for many Sjoggies. However, due to the numerous side effects of these drugs, careful monitoring is required when prednisone is taken over long periods of time or at high dosages.

Others, like myself, take prednisone only when my symptoms require it. In these instances, Dr. S. prescribes a "burst and taper" dosage, meaning an inital dose followed by gradually smaller amounts of the drug until the medication is discontinued.

The side effects of corticosteroids are the limiting factor in prescribing this powerful drug. Some of the side effects include:

skin thinning

acne

increased hair growth, or hirsutism

cataracts

premature atherosclerosis

gastritis

menstrual disturbances

osteoporosis

muscle weakness

diabetes mellitus

high blood pressure

increased risk of infection

(Information taken from The New Sjogren's Syndrome Handbook edited by J. Wallace, MD, pgs 131-132)

MayoClinic.com also has a very good article, found here, that explains prednisone basics.

Messages in this topic (3) ____________ _________ _________ _________ _________ __

[Guest guest]

run Elisa run

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Sjogren's and prednisoneTo: "Breathe-Support " <Breathe-Support >Date: Sunday, August 16, 2009, 11:22 AM

Barbara,

I have Sjogren's that was actually diagnosed after my PF by a month. From a HRCT in July of '08 to another in Nov. '08, my lungs actually improved, inflammation- wise, on 60 mgs. of prednisone. In Feb. of this year, I had tapered down to 5mgs, then 2. after a flare and coughing, I am now back on 10 mgs. I say hang in there, even with nasty side-effects. I wish I hadn't been so eager to get off the meds. Are you also on Imuran? Did you have a biopsy? my doctor says no reason to put me through that knowing autoimmune is obvious cause. Of course, he is same doctor that told me about a "new little test" called the six-minute walk just five months ago. This is a major teaching hospital in Dallas and his specialty is pulmonary fibrosis! I may one day take Bruce's route and go to Chicago, Duke, or Emory to get a second opinion.

Elisa age 53 NSIP/LIP Sjogren's, Raynaud's, April '08Sent from my iPhone

On Aug 15, 2009, at 3:11 PM, Barbara McD <bamny (AT) yahoo (DOT) com> wrote:

Thank you very much Beth. I appreciate you!

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, August 15, 2009 2:12:41 PMSubject: Re: Sjogren's and prednisone

Barb,

This is the best "nutshell" info on Sjorgren's and prednisone that I've seen. I copied and pasted it for you below. Remember when you're taking prednisone for the Sjorgren's you are taking on the inflammation in your body. Inflammation is the enemy, that's what causes the damage whether it's your kidneys, your lungs, liver etc. There are other weapons in the toolbox but prednisone is an important one.

We had a member here, Joyce Dalton who had Sjorgren's among other things. She used prednisone and every other trick in the book to keep the disease at bay. She lived much much longer than any of her doctors expected her to.

Whether it will help you is not something you can necessarily predict. But prednisone is known to be effective against these auto-immune diseases where it's effectiveness in the case of IPF or a non-inflammatory based pulmonary fibrosis is much lower.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

We all know that Sjogren's is an inflammatory autoimmune condition, which means that our bodies and specifically white blood cells have mistakenly identified our own tissues as foreign substances. These cranky leukocytes then launch an attack on our own tissues and in doing so, create inflammation. You can refresh your memory about inflammation and it's nasty effects here in this excellent article by the Cleveland

Clinic.

In Sjogren's Syndrome, this inflammation can affect the saliva glands, the lacrimal glands in the eyelids, and other mucous-secreting glands, resulting in the hallmark dry eye and dry mouth symptoms. Other body-wide symptoms such as significant fatigue and joint pain are caused by inflammation.

So why is an understanding of inflammation important in a discussion about prednisone? Because this medication can be a significant tool used among several other medications to reduce inflammation.

An anti-inflammatory toolbox can contain several medications and strategies:

pacing activities with rest periods

adding omega 3 fatty acids to the diet

maintaining a healthy body weight

non steroidal anti inflammatory drugs such as ibuprofen, asprin, and naproxyn

anti malarial drugs such as hydroxychloroquine

other medications such as methotrexate

corticosteriods such as prednisone

Corticosteroids, or drugs that closely resemble our own hormone cortisol, are a relatively new addition to the anti-inflammatory toolbox, explained here on About.com:

Corticosteroids or glucocorticoids, often just called "steroids", where once thought to be almost miraculous. In 1948, at the Mayo Clinic in Rochester, Minnesota a group of arthritis patients were given daily injections of a corticosteroid. The results were so striking and the improvement so dramatic that it was thought that the "cure" for arthritis had been discovered. However, as the use of corticosteroids expanded over the years, side effects emerged and it was realized that high doses given over prolonged periods of time turned steroids into "scare-oids"

..

Prednisone was found to have a dramatic anti-inflammatory effect, a valuable asset in dealing with significant and systemic symptoms in Sjogren's, such as lung, kidney, liver, and gastro- intestinal inflammation.

Used judiciously, corticosteroids are a necessary long-term medication for many Sjoggies. However, due to the numerous side effects of these drugs, careful monitoring is required when prednisone is taken over long periods of time or at high dosages.

Others, like myself, take prednisone only when my symptoms require it. In these instances, Dr. S. prescribes a "burst and taper" dosage, meaning an inital dose followed by gradually smaller amounts of the drug until the medication is discontinued.

The side effects of corticosteroids are the limiting factor in prescribing this powerful drug. Some of the side effects include:

skin thinning

acne

increased hair growth, or hirsutism

cataracts

premature atherosclerosis

gastritis

menstrual disturbances

osteoporosis

muscle weakness

diabetes mellitus

high blood pressure

increased risk of infection

(Information taken from The New Sjogren's Syndrome Handbook edited by J. Wallace, MD, pgs 131-132)

MayoClinic.com also has a very good article, found here, that explains prednisone basics.

Messages in this topic (3) ____________ _________ _________ _________ _________ __