Re: Beverly Joy

[Guest guest]

Beverly, I don't know what to tell you. It is up to you and your Dr. I KNOW prednisone does not help IPF. It does however help somewith NSIP. It is great for some and not for others. I get so upset knowing what it does to our bodies--down the road.. I think you just have to have a heart to heart with your Dr. If he isn't patient with you and explains his reasoning on it.. "BY BY DR." google it and read the side effects.AS far as the smothering well that is pretty much what this lung disease does.. BUT it is not like someone comes up and grabs you by the throat and squeezes. It is gradual like the disease has been all along. Most I hear about have fought so very hard to live and in the end just get to weak to get around then to bed and with that, go to sleep.. Of course hospice is usually there to help. NO NOT drug us out of our minds. If we can stay relaxed we can breath much easier. The further along I go the more I have little talks with the Lord and ask Him to please give me strength and peace to withstand andnot freak my family out.. LOL He has given me comfort and strength this far and I know He will when I go home to be with Him. I do pray over this board and ask for peace and strength for each and every one here. God Bless YOU. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. What do you do if your doctor tells you that you will smother to death in a few months if you don't take it?Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho 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]

Peggy, I do appreciate your prayers. We all need them and maybe they will get me through this in spite of the doctor problems I keep having. I got my deck fixed today. Maybe that will help sell my house so I can move to the Seattle area and go to the IPF center of excellence there. I feel like I am getting weaker. I've had to turn my oxygen up. I know that it isn't very high yet but I have trouble just climbing the 3 steps in my house. I need exercise and there doesn't seem to be a way to get any here. I went to the local yearky doings in the park yesterday. I did manage to get to most of the vendors and then I sat down and listened to fifties music for 2 hours. I enjoyed it but it sure tired me out.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

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) ____________ _________ _________ _________ _________ __