Hi all

[Guest guest]

Caro,

I understand the need to wallow sometimes, been there, done that. Still go back sometimes but I try not to get too comfortable there. 30mg to 20mg of prednisone is a big drop all at once. I know you're anxious to get off the stuff but please go slowly. Your body needs time to adjust. Especially if you're feeling depressed wean SLOWLY for your own safety and sanity. The very most I would drop would be 30 to 25 for a couple of weeks and then maybe down to 20. Just my experience and 2 cents worth.

Once you're under 20 mg you should start to notice it is easier to lose weight. When I got under 20mg my blood sugar normalized and so did my appetite. I was always bruised when I was on the prednisone, looked constantly like someone was beating me up. I didn't have the problem with constipation....instead of laxatives what about something like Citracel or one of the other fiber supplements, that and lots of water could help. Also lots and lots of fresh fruit and vegetables.

Please let the doctor know that you're still struggling with the depression that the Cymbalta is working for the other issues but not the depression. They may need to add another med at least for awhile.

I'm with ya, I hate this disease! It's horrible and it's stolen so much from me. But you're fighting back, rehab and exercise etc etc. Don't you feel like rehab and the exercise help you to feel as though you're regaining some control? It felt that way to me and still does every time I get on that awful treadmill, I hate it and am thankful for it all at the same time.

Hugs,

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Hi all

Well have been away for a bit. Not having a good day today. Am sinking more and more into depression I fear. Since starting prednisone, I have now gained 15 pounds and still rising. No matter what I do, the scales still go up. Have started pulmo rehab, exercising more, eating healthy, still gaining weight. Just tapered the dose down from 30 mg to 20 mg on the first of June, so I am REALLY hoping that will help with the weight. I can't wear any of my summer clothes. Birmingham for me is a week from Monday, appointment is Tuesday morning the 17th. I can't believe it is here already. I am so nervous. I wish it was over. I am so tired all the time. Today was just a BLAH day. I have done good just to make it through the day. I so hate this disease. Having terrible constipation, too. Have never had it this bad in my life until this year. I feel like I am becoming laxative addicted and that scares me, too.

Has anyone else had this problem with prednisone and Imuran? I have started on Cymbalta 60 mg for the neuropathic pain from my back and the restless legs and she said it is supposed to help with the depression, but I can't tell it. I have been on that since April, too. I do feel like it is helping with the neuropathic pain and the restless legs, but I don't feel any help with the depression. I feel like I am wallowing in a pity pot, because so many of you have it so worse than me. My sats dropped again today at pulmo rehab but not bad enough to be worried. She said we are moving up to level 4 next week on the exercises next week so that will be more strain on the body. I have bruises all over my legs from doing the workouts. I can just bump something and my leg turns black and blue. I look like somebody beat the crap out of me. My stomach is distended and I look like I am 6 months pregnant, too.

Ok, I guess that is enough Woe is me for today. Haven't meant to be hiding out. I have still been reading posts everyday. I haven't forgotten anyone, I have just been wallowing --Caro

[Guest guest]

Thanks Beth. I do feel like the rehab is helping. I didn't feel like going today, just really tired all day, but I MADE myself go anyway, and I felt much better after I went. I am glad to know hopefully the weight will start coming off soon. I don't really understand the reasoning why they put you on such a high dose and then drop you back down. I have been on short-term tapers of prednisone before for allergies and poison ivy, but never for the UIP before this year. It really affects you differently at a higher dose. I didn't realize it would make such a difference. I am not even eating any more than before. Most days I don't even want to eat, but still gain weight. When I was on the

tapering doses before, I always lost weight.

I actually like the treadmill, but I was on 1.2 mph until last Wednesday and she bumped me up to 2.0 mph. She said next week we will go up more, so we will see I guess. The thing I have the most trouble with is the bike. I break out in a sweat every time I get on it and she only has us going at level 3 for 10 minutes. I have found too that I sweat a lot more than I used to. Sometimes I even wake up at night soaking wet, or will just be watching TV and break out in a sweat, no exertion at all. Miserable!!

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

Subject: Re: Hi allTo: Breathe-Support Date: Friday, June 6, 2008, 7:57 PM

Caro,

I understand the need to wallow sometimes, been there, done that. Still go back sometimes but I try not to get too comfortable there. 30mg to 20mg of prednisone is a big drop all at once. I know you're anxious to get off the stuff but please go slowly. Your body needs time to adjust. Especially if you're feeling depressed wean SLOWLY for your own safety and sanity. The very most I would drop would be 30 to 25 for a couple of weeks and then maybe down to 20. Just my experience and 2 cents worth.

Once you're under 20 mg you should start to notice it is easier to lose weight. When I got under 20mg my blood sugar normalized and so did my appetite. I was always bruised when I was on the prednisone, looked constantly like someone was beating me up. I didn't have the problem with constipation. ...instead of laxatives what about something like Citracel or one of the other fiber supplements, that and lots of water could help. Also lots and lots of fresh fruit and vegetables.

Please let the doctor know that you're still struggling with the depression that the Cymbalta is working for the other issues but not the depression. They may need to add another med at least for awhile.

I'm with ya, I hate this disease! It's horrible and it's stolen so much from me. But you're fighting back, rehab and exercise etc etc. Don't you feel like rehab and the exercise help you to feel as though you're regaining some control? It felt that way to me and still does every time I get on that awful treadmill, I hate it and am thankful for it all at the same time.

Hugs,

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Hi all

Well have been away for a bit. Not having a good day today. Am sinking more and more into depression I fear. Since starting prednisone, I have now gained 15 pounds and still rising. No matter what I do, the scales still go up. Have started pulmo rehab, exercising more, eating healthy, still gaining weight. Just tapered the dose down from 30 mg to 20 mg on the first of June, so I am REALLY hoping that will help with the weight. I can't wear any of my summer clothes. Birmingham for me is a week from Monday, appointment is Tuesday morning the 17th. I can't believe it is here already. I am so nervous. I wish it was over. I am so tired all the time. Today was just a BLAH day. I have done good just to make it through the day. I so hate this disease. Having terrible constipation, too. Have never had it this bad in my life until this year. I feel like I am becoming laxative addicted and that scares me, too.

Has anyone else had this problem with prednisone and Imuran? I have started on Cymbalta 60 mg for the neuropathic pain from my back and the restless legs and she said it is supposed to help with the depression, but I can't tell it. I have been on that since April, too. I do feel like it is helping with the neuropathic pain and the restless legs, but I don't feel any help with the depression. I feel like I am wallowing in a pity pot, because so many of you have it so worse than me. My sats dropped again today at pulmo rehab but not bad enough to be worried. She said we are moving up to level 4 next week on the exercises next week so that will be more strain on the body. I have bruises all over my legs from doing the workouts. I can just bump something and my leg turns black and blue. I look like somebody beat the crap out of me. My stomach is distended and I look like I am 6 months pregnant, too.

Ok, I guess that is enough Woe is me for today. Haven't meant to be hiding out. I have still been reading posts everyday. I haven't forgotten anyone, I have just been wallowing --Caro

[Guest guest]

HI CAROWADE:

THIS IS MARY LOU

I read your post just now and I have been on 20mg of Prednisone for

many months, weight keeps going up no matter what I do, and it is

making me to the point I do not want to go out of the house. I can

only fit in my pj's and nightgown crap. Anyhow, pulmo wants me to

stay on the 20mg as my oxy. level keeps going up 1 level each month.

Last Oct, was the first time on oxy. 24/7 and still on it 24/7. For

the first time today while working in the house, I had to raise it to

7 1/2, barely enough I say!!!! Scarey, to say the least!!! Well, the

tubing is my main " gripe " . It is ever-always-eternally-forever in my

FACE. I hate it with a passion. I always think it is bothering

everyone else in the house so I spend most of my time trying to keep

it lassoed around my fat body. I wonder what has happened to my

looks, but you know what Dear-heart???? My looks now are deep in my

heart where they belong anyhow. Next Month I will be 74, and I have

lived, but what really makes me angry now is the young ages of the

people on this board that have PF so young. I was diagnosed in 2002

and just went on Oxy. last Oct. 2007. 24/7

My depression used to set in a lot but since I have become a faithful

member of this support group, it has really made all the difference

in my life as I have met so many FINE people and sincere and loving

people.

LEANNE has helped me a great deal and I continue to send her love as

she is not as fortunate as I at this stage. She works so very hard

for our group and has a full time job and I don't know how she does

it all. She is to be admired fiercly for her efforts in all aspects

of dealing with this dreadful disease, and for creating this board

for souls such as ourselves for comfort and love and support.

I have had days when I am so constipated, it is awful, not so much

now, but maybe it is because I have increased my liters of oxy. a

little more and getting more oxy to my other organs.

If you can give a little more time to the board, not necessarily

posting all the time but reading and listening and joining in on our e

(every other Thursday night chats), that is wonderful. Just hearing

the folks sweet voices on the other end of the phone is a feeling you

can't explain, because like Sherry said last night on chat,

first time she has talked with PF patients, really. My first chat

was so inspiring, I don't dare miss them anymore. Don't know what I

would do without them. Now I am recognizing their individual voices

and that part is SWEET.

You know what 2? Prednisone does so many different things TO and

FOR our bodies but it is the only medication we have today that helps

my breathing, coughing, and makes me feel good. It may be slowly

destroying my body in other ways, but I look at feeling really good,

and I DO. That, to me is the most important thing, and my family has

been wonderful. I wish you all had angels like I have around, I am

sure you do. I LOVE YOU THIS DAY !!! MARY LOU PATTERSON IPF /02

>

> Well have been away for a bit. Not having a good day today. Am

> sinking more and more into depression I fear. Since starting

> prednisone, I have now gained 15 pounds and still rising. No

matter

> what I do, the scales still go up. Have started pulmo rehab,

> exercising more, eating healthy, still gaining weight. Just

tapered

> the dose down from 30 mg to 20 mg on the first of June, so I am

> REALLY hoping that will help with the weight. I can't wear any of

my

> summer clothes. Birmingham for me is a week from Monday,

appointment

> is Tuesday morning the 17th. I can't believe it is here already. I

> am so nervous. I wish it was over. I am so tired all the time.

> Today was just a BLAH day. I have done good just to make it

through

> the day. I so hate this disease. Having terrible constipation,

> too. Have never had it this bad in my life until this year. I

feel

> like I am becoming laxative addicted and that scares me, too. Has

> anyone else had this problem with prednisone and Imuran? I have

> started on Cymbalta 60 mg for the neuropathic pain from my back and

> the restless legs and she said it is supposed to help with the

> depression, but I can't tell it. I have been on that since April,

> too. I do feel like it is helping with the neuropathic pain and

> the restless legs, but I don't feel any help with the depression.

I

> feel like I am wallowing in a pity pot, because so many of you have

> it so worse than me. My sats dropped again today at pulmo rehab

but

> not bad enough to be worried. She said we are moving up to level 4

> next week on the exercises next week so that will be more strain on

> the body. I have bruises all over my legs from doing the

workouts.

> I can just bump something and my leg turns black and blue. I look

> like somebody beat the crap out of me. My stomach is distended and

I

> look like I am 6 months pregnant, too.

>

> Ok, I guess that is enough Woe is me for today. Haven't meant to

be

> hiding out. I have still been reading posts everyday. I haven't

> forgotten anyone, I have just been wallowing --

>

> Caro

>

[Guest guest]

Hi Caro, I have the constipation controlled with dried plums and over the counter dulcolax. I only have problem now when on antibiotics. Oops forgot i take aricept(for Alzheimers) which also helps the constipation problem. Bruising- yes seems like I stumble into a mattress and it bruises. Some times I am black and blue from bumping unknown objects. The full dose Requip has controlled my rls and leg pain. I am still looking for a better anti depressant so am dissapointed the cymbalta isn't helping you yet. All in all life is better right now if the sun would just shine again. I'm sure things will be better for you too.

Steve 60 from WA IPF 2006 Parkinsons 2008

Alzheimers 2008

Reply-To: Breathe-Support To: Breathe-Support Subject: Hi allDate: Sat, 07 Jun 2008 00:34:04 -0000

Well have been away for a bit. Not having a good day today. Am sinking more and more into depression I fear. Since starting prednisone, I have now gained 15 pounds and still rising. No matter what I do, the scales still go up. Have started pulmo rehab, exercising more, eating healthy, still gaining weight. Just tapered the dose down from 30 mg to 20 mg on the first of June, so I am REALLY hoping that will help with the weight. I can't wear any of my summer clothes. Birmingham for me is a week from Monday, appointment is Tuesday morning the 17th. I can't believe it is here already. I am so nervous. I wish it was over. I am so tired all the time. Today was just a BLAH day. I have done good just to make it through the day. I so hate this disease. Having terrible constipation, too. Have never had it this bad in my life until this year. I feel like I am becoming laxative addicted and that scares me, too. Has anyone else had this problem with prednisone and Imuran? I have started on Cymbalta 60 mg for the neuropathic pain from my back and the restless legs and she said it is supposed to help with the depression, but I can't tell it. I have been on that since April, too. I do feel like it is helping with the neuropathic pain and the restless legs, but I don't feel any help with the depression. I feel like I am wallowing in a pity pot, because so many of you have it so worse than me. My sats dropped again today at pulmo rehab but not bad enough to be worried. She said we are moving up to level 4 next week on the exercises next week so that will be more strain on the body. I have bruises all over my legs from doing the workouts. I can just bump something and my leg turns black and blue. I look like somebody beat the crap out of me. My stomach is distended and I look like I am 6 months pregnant, too. Ok, I guess that is enough Woe is me for today. Haven't meant to be hiding out. I have still been reading posts everyday. I haven't forgotten anyone, I have just been wallowing --Caro

[Guest guest]

I love you, too, Lou!! I do take time to read the posts everyday, but I don't post as often as I wish I could. I work during the day and they have gotten really strict about how we use the computers, so I don't get to check my email usually until night and some nights I am so tired just from working all day that I just read the posts and go to bed. I probably should join in on the chat but it is hard for me on Thursdays cuz I usually have the grandkids and way too much noise and I wouldn't be able to hear anything anyway.

I totally agree with you about this group, though. You all have been a lifesaver for me!! I think I would have given up long ago had it not been for all of you. This disease is the worst in the world to be cursed with, but this group is a Godsend and I am so fortunate to have found all of you!! Thanks again, Lou!!

Caro

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

Subject: Re: Hi allTo: Breathe-Support Date: Friday, June 6, 2008, 8:39 PM

HI CAROWADE:THIS IS MARY LOU I read your post just now and I have been on 20mg of Prednisone for many months, weight keeps going up no matter what I do, and it is making me to the point I do not want to go out of the house. I can only fit in my pj's and nightgown crap. Anyhow, pulmo wants me to stay on the 20mg as my oxy. level keeps going up 1 level each month. Last Oct, was the first time on oxy. 24/7 and still on it 24/7. For the first time today while working in the house, I had to raise it to 7 1/2, barely enough I say!!!! Scarey, to say the least!!! Well, the tubing is my main "gripe". It is ever-always- eternally- forever in my FACE. I hate it with a passion. I always think it is bothering everyone else in the house so I spend most of my time trying to keep it lassoed around my fat body. I wonder what has happened to my looks, but you know what Dear-heart?? ?? My looks now are deep in

my heart where they belong anyhow. Next Month I will be 74, and I have lived, but what really makes me angry now is the young ages of the people on this board that have PF so young. I was diagnosed in 2002 and just went on Oxy. last Oct. 2007. 24/7My depression used to set in a lot but since I have become a faithful member of this support group, it has really made all the difference in my life as I have met so many FINE people and sincere and loving people.LEANNE has helped me a great deal and I continue to send her love as she is not as fortunate as I at this stage. She works so very hard for our group and has a full time job and I don't know how she does it all. She is to be admired fiercly for her efforts in all aspects of dealing with this dreadful disease, and for creating this board for souls such as ourselves for comfort and love and support.I have had days when I am so

constipated, it is awful, not so much now, but maybe it is because I have increased my liters of oxy. a little more and getting more oxy to my other organs.If you can give a little more time to the board, not necessarily posting all the time but reading and listening and joining in on our e(every other Thursday night chats), that is wonderful. Just hearing the folks sweet voices on the other end of the phone is a feeling you can't explain, because like Sherry said last night on chat, first time she has talked with PF patients, really. My first chat was so inspiring, I don't dare miss them anymore. Don't know what I would do without them. Now I am recognizing their individual voices and that part is SWEET.You know what 2? Prednisone does so many different things TO and FOR our bodies but it is the only medication we have today that helps my breathing, coughing, and makes me feel

good. It may be slowly destroying my body in other ways, but I look at feeling really good, and I DO. That, to me is the most important thing, and my family has been wonderful. I wish you all had angels like I have around, I am sure you do. I LOVE YOU THIS DAY !!! MARY LOU PATTERSON IPF /02>> Well have been away for a bit. Not having a good day today. Am > sinking more and more into depression I fear. Since starting > prednisone, I have now gained 15 pounds and still rising. No matter > what I do, the scales still go up. Have started pulmo rehab, > exercising more, eating healthy, still gaining weight. Just tapered > the dose down from 30 mg to 20 mg on the first of June, so I am > REALLY hoping

that will help with the weight. I can't wear any of my > summer clothes. Birmingham for me is a week from Monday, appointment > is Tuesday morning the 17th. I can't believe it is here already. I > am so nervous. I wish it was over. I am so tired all the time. > Today was just a BLAH day. I have done good just to make it through > the day. I so hate this disease. Having terrible constipation, > too. Have never had it this bad in my life until this year. I feel > like I am becoming laxative addicted and that scares me, too. Has > anyone else had this problem with prednisone and Imuran? I have > started on Cymbalta 60 mg for the neuropathic pain from my back and > the restless legs and she said it is supposed to help with the > depression, but I can't tell it. I have been on that since April, > too. I do feel like it is helping with the neuropathic pain and

> the restless legs, but I don't feel any help with the depression. I > feel like I am wallowing in a pity pot, because so many of you have > it so worse than me. My sats dropped again today at pulmo rehab but > not bad enough to be worried. She said we are moving up to level 4 > next week on the exercises next week so that will be more strain on > the body. I have bruises all over my legs from doing the workouts. > I can just bump something and my leg turns black and blue. I look > like somebody beat the crap out of me. My stomach is distended and I > look like I am 6 months pregnant, too. > > Ok, I guess that is enough Woe is me for today. Haven't meant to be > hiding out. I have still been reading posts everyday. I haven't > forgotten anyone, I have just been wallowing --> >

Caro>

[Guest guest]

Hi Steve -- I have been using the OTC Dulcolax, too, and that seems to help. I have tried eating fiber cereal, Raisin Bran, etc. I thought about maybe trying an OTC fiber supplement, too, to take daily and see if that would help. It seems like sometimes I get so bloated I get the moon faces -- AWFUL!! I haven't tried dried plums yet. I will give that a shot. I don't think I could do prunes, just too yucky!! Maybe raisins even, I like those, too. I am up to trying pretty much anything at this point. My pulmo doc's wife is a doc, too, family practice, so she is now my family physician and he is my pulmo. At least I can go to the same office!! She said she would maybe try me on Requip

if the Cymbalta did not help. I am supposed to see her again in July and the pulmo June 30. Am going to University of Birmingham June 17 for the full workup at the Pulmonary Fibrosis Clinic. Hopefully I will at least get more info on the disease from that visit. Probably start on a clinical trial or something.

Thanks so much for the help. Seems like whenever I fall into the "woe is me" world, I can always come here and feel better. You guys always know the right thing to say. And the best part is I know you all know exactly how I feel and that to me is what makes this group so special. I know I still have tons to go through with this disease process before it is over and I am so glad I have all of you to go through it with. God bless you all!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

Subject: RE: Hi allTo: Breathe-Support Date: Friday, June 6, 2008, 8:58 PM

Hi Caro, I have the constipation controlled with dried plums and over the counter dulcolax. I only have problem now when on antibiotics. Oops forgot i take aricept(for Alzheimers) which also helps the constipation problem. Bruising- yes seems like I stumble into a mattress and it bruises. Some times I am black and blue from bumping unknown objects. The full dose Requip has controlled my rls and leg pain. I am still looking for a better anti depressant so am dissapointed the cymbalta isn't helping you yet. All in all life is better right now if the sun would just shine again. I'm sure things will be better for you too.

Steve 60 from WA IPF 2006 Parkinsons 2008

Alzheimers 2008

From: "carowade4444" <carowade4444@ yahoo.com>Reply-To: Breathe-Support@ yahoogroups. comTo: Breathe-Support@ yahoogroups. comSubject: Hi allDate: Sat, 07 Jun 2008 00:34:04 -0000

Well have been away for a bit. Not having a good day today. Am sinking more and more into depression I fear. Since starting prednisone, I have now gained 15 pounds and still rising. No matter what I do, the scales still go up. Have started pulmo rehab, exercising more, eating healthy, still gaining weight. Just tapered the dose down from 30 mg to 20 mg on the first of June, so I am REALLY hoping that will help with the weight. I can't wear any of my summer clothes. Birmingham for me is a week from Monday, appointment is Tuesday morning the 17th. I can't believe it is here already. I am so nervous. I wish it was over. I am so tired all the time. Today was just a BLAH day. I have done good just to make it through the day. I so hate this disease. Having terrible constipation, too. Have never had it this bad in my life until this year. I feel like I am becoming laxative addicted and that scares me, too.

Has anyone else had this problem with prednisone and Imuran? I have started on Cymbalta 60 mg for the neuropathic pain from my back and the restless legs and she said it is supposed to help with the depression, but I can't tell it. I have been on that since April, too. I do feel like it is helping with the neuropathic pain and the restless legs, but I don't feel any help with the depression. I feel like I am wallowing in a pity pot, because so many of you have it so worse than me. My sats dropped again today at pulmo rehab but not bad enough to be worried. She said we are moving up to level 4 next week on the exercises next week so that will be more strain on the body. I have bruises all over my legs from doing the workouts. I can just bump something and my leg turns black and blue. I look like somebody beat the crap out of me. My stomach is distended and I look like I am 6 months pregnant, too.

Ok, I guess that is enough Woe is me for today. Haven't meant to be hiding out. I have still been reading posts everyday. I haven't forgotten anyone, I have just been wallowing --Caro

[Guest guest]

Caro,

Have been missing you. It is o.k. to wallow. It is o.k. to be nervous about the upcoming appointment. Get your list of questions ready. Be prepared and that will help you. Let us know what the Birmingham people say. Be careful going off the Pred. It can add to your pain and depression when stopped too soon. I am cutting down. 2.5 mgs a month....not 10-20. That is a killer drop.

May God be with you and I hope all your questions get answered in Birmingham.

Don't worry about the weight. It will come off. Just a fact of Pred.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Well have been away for a bit. Not having a good day today. Am > sinking more and more into depression I fear. Since starting > prednisone, I have now gained 15 pounds and still rising. No matter > what I do, the scales still go up. Have started pulmo rehab, > exercising more, eating healthy, still gaining weight. Just tapered > the dose down from 30 mg to 20 mg on the first of June, so I am > REALLY hoping that will help with the weight. I can't wear any of my > summer clothes. Birmingham for me is a week from Monday, appointment > is Tuesday morning the 17th. I can't believe it is here already. I > am so nervous. I wish it was over. I am so tired all the time. > Today was just a BLAH day. I have done good just to make it through > the day. I so hate this disease. Having terrible constipation, > too. Have never had it this bad in my life until this year. I feel > like I am becoming laxative addicted and that scares me, too. Has > anyone else had this problem with prednisone and Imuran? I have > started on Cymbalta 60 mg for the neuropathic pain from my back and > the restless legs and she said it is supposed to help with the > depression, but I can't tell it. I have been on that since April, > too. I do feel like it is helping with the neuropathic pain and > the restless legs, but I don't feel any help with the depression. I > feel like I am wallowing in a pity pot, because so many of you have > it so worse than me. My sats dropped again today at pulmo rehab but > not bad enough to be worried. She said we are moving up to level 4 > next week on the exercises next week so that will be more strain on > the body. I have bruises all over my legs from doing the workouts. > I can just bump something and my leg turns black and blue. I look > like somebody beat the crap out of me. My stomach is distended and I > look like I am 6 months pregnant, too. > > Ok, I guess that is enough Woe is me for today. Haven't meant to be > hiding out. I have still been reading posts everyday. I haven't > forgotten anyone, I have just been wallowing --> > Caro>

[Guest guest]

I'm so glad it looks like good news

What's a tori?

Love Ze xx>> The bone growth biopsy was today and it seems to be all good news. We > won't actually have results for a couple of weeks but it looked like a > tori and not a cancer growth plus it was a little smaller than before > and cancer growths don't do that. My oral surgeon was practically > jumping around he was so excited at what he found. And the pain is not > terrible.> The specimen has to be broken down by acid or something so they can > test it and that takes time.> SO I am winning the cancer bingo still - only 1 positive and 4 negative > since then.> It is all good! Thanks for all your prayers and support.> S, Lubbock, TX> NSIP w/PF 12/2006>

[Guest guest]

It is basically a growth of bone shaped something like a mushroom

that pops up in your mouth on the gums from the jawbone. If you

picture what a balloon looks like if you stick your finger in it,

that's sort of what it looks like coming out of the gum. It didn't

hurt, just was a nuisance. But then the thing wore a hole in the

hole and poked its head out so I had exposed bone. And then

everybody had a stroke about it because there should never be

exposed bone anywhere.

He thinks I irritated it with my toothbrush or a chip turned

sideways or something.

Much ado about nothing.

> >

> > The bone growth biopsy was today and it seems to be all good

news. We

> > won't actually have results for a couple of weeks but it looked

like a

> > tori and not a cancer growth plus it was a little smaller than

before

> > and cancer growths don't do that. My oral surgeon was practically

> > jumping around he was so excited at what he found. And the pain

is not

> > terrible.

> > The specimen has to be broken down by acid or something so they

can

> > test it and that takes time.

> > SO I am winning the cancer bingo still - only 1 positive and 4

> negative

> > since then.

> > It is all good! Thanks for all your prayers and support.

> > S, Lubbock, TX

> > NSIP w/PF 12/2006

> >

>

[Guest guest]

That doesn't sound like fun! > > >> > > The bone growth biopsy was today and it seems to be all good > news. We> > > won't actually have results for a couple of weeks but it looked > like a> > > tori and not a cancer growth plus it was a little smaller than > before> > > and cancer growths don't do that. My oral surgeon was practically> > > jumping around he was so excited at what he found. And the pain > is not> > > terrible.> > > The specimen has to be broken down by acid or something so they > can> > > test it and that takes time.> > > SO I am winning the cancer bingo still - only 1 positive and 4> > negative> > > since then.> > > It is all good! Thanks for all your prayers and support.> > > S, Lubbock, TX> > > NSIP w/PF 12/2006> > >> >>

[Guest guest]

Hi ,

I'm glad to hear it wasn't cancer and the pain isn't terrible.

HugsIrenePF 03/07 Raynaud's Disease 09/07Crohn's Disease 03/95 Asthma 02/92

Re: Hi all

>> The bone growth biopsy was today and it seems to be all good news. We > won't actually have results for a couple of weeks but it looked like a > tori and not a cancer growth plus it was a little smaller than before > and cancer growths don't do that. My oral surgeon was practically > jumping around he was so excited at what he found. And the pain is not > terrible.> The specimen has to be broken down by acid or something so they can > test it and that takes time.> SO I am winning the cancer bingo still - only 1 positive and 4 negative > since then.> It is all good! Thanks for all your prayers and support.> S,

Lubbock, TX> NSIP w/PF 12/2006>

Instant message from any web browser! Try the new Yahoo! Canada Messenger for the Web BETA

[Guest guest]

S. It's OK to take a break from

this board. We all have done it.

What is mixed connective tissue disease? I don't remember reading

about that here.

Is it the cause of PF? or a result of PF? or not part of it at all?

It's nice to see your posts.

Have a good week and rest to get rid of the URI!

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

lsmith7892006 wrote:

I fell off the map for a while but now I am back. I went into a

big

denial phase. My lung capacity went up to 80% and I stopped needing

oxygen. My lungs are stable. So I went out of the lung disease

world for a while. Turns out we can run but we can't hide. My lungs

are still good but I've had a URI I can't seem to get rid of. So I

saw a weekend doc yesterday who gave me some levaquin and tussinex

(now that is the stuff) and hopefully will get better. It sucks to

have tonsillitis at 50!

But the thing is he looked at my medical records with a fresh eye and

announced that probably what is the root of all evil in my body is

mixed connective tissue disease. And from what I read and feel I am

pretty sure he's right. I will probably have the tests done at some

point but not yet.

I don't know why in particular I tuned back in tonight but was

saddened to read 's post. Godspeed, .

Missed you guys! Bruce, Leanne, Mama-Sher, Z, Babs, Joyce,

-Beth, and all my peeps. I hope you have been well and

happy.

S, Lubbock, TX

NSIP w/PF 12/2006

No virus found in this incoming message.

Checked by AVG - http://www.avg.com

Version: 8.0.138 / Virus Database: 270.4.10/1549 - Release Date: 7/12/2008 4:31 PM

[Guest guest]

Glad you did read. Wish you didn't belong to our group of PF'ers because

of no need.

Now if we can talk into a get together and get Wally to play with

us (now that shouldn't be hard) and make sure Lizabeth (reminds me I

need to text her and she how she is doing) is available and Tarona if

she wants and we can have a great Lubbock get together. My goodness, put

together Wally's family and yours and friends we could have a great

group.

>

> I fell off the map for a while but now I am back. I went into a big

> denial phase. My lung capacity went up to 80% and I stopped needing

> oxygen. My lungs are stable. So I went out of the lung disease

> world for a while. Turns out we can run but we can't hide. My lungs

> are still good but I've had a URI I can't seem to get rid of. So I

> saw a weekend doc yesterday who gave me some levaquin and tussinex

> (now that is the stuff) and hopefully will get better. It sucks to

> have tonsillitis at 50!

> But the thing is he looked at my medical records with a fresh eye and

> announced that probably what is the root of all evil in my body is

> mixed connective tissue disease. And from what I read and feel I am

> pretty sure he's right. I will probably have the tests done at some

> point but not yet.

>

> I don't know why in particular I tuned back in tonight but was

> saddened to read 's post. Godspeed, .

>

> Missed you guys! Bruce, Leanne, Mama-Sher, Z, Babs, Joyce,

> -Beth, and all my peeps. I hope you have been well and

> happy.

>

> S, Lubbock, TX

> NSIP w/PF 12/2006

>

[Guest guest]

/ and any other s

Mixed Connective Tissue Disease is rare and has symptoms of several

other connective tissue diseases. It can be determined by a blood test

for the antibody U1-RNP. Mixed is normally diagnosed in 20's and 30's.

Now, more commonly when they think we have an autoimmune and have no

idea what we get labelled as undifferentiated connective tissue disease

(MB and possibly me). Reality is many of us show signs of autoimmune but

can't be directly tied to one. In my case there are about 7 different

indicators that make them think I have one-in process of second opinion

since U of Chicago says I have one after others said they saw no

indication.

Undifferentiated and Polymyositis and perhaps Mixed, although I haven't

read where it was tied to PF (just PH), all may be possible causes of

PF. Or could be independent. But they are highly suspected. Many

autoimmune diseases are given credit for being causes although so much

still unknown, who knows. There are those who believe all PF is an

autoimmune reaction of some sort. Also, many of the test results

consistent with autoimmune could be caused by PF with no separate

autoimmune. One of my doctors feels he can explain away 6 or my 7

indicators without saying autoimmune. However, the elevated muscle

enzymes can't easily be explained away. So, here I go for another

electromyography and then we'll see what.

So did that confuse you enough?

>

> > I fell off the map for a while but now I am back. I went into a big

> > denial phase. My lung capacity went up to 80% and I stopped needing

> > oxygen. My lungs are stable. So I went out of the lung disease

> > world for a while. Turns out we can run but we can't hide. My lungs

> > are still good but I've had a URI I can't seem to get rid of. So I

> > saw a weekend doc yesterday who gave me some levaquin and tussinex

> > (now that is the stuff) and hopefully will get better. It sucks to

> > have tonsillitis at 50!

> > But the thing is he looked at my medical records with a fresh eye

and

> > announced that probably what is the root of all evil in my body is

> > mixed connective tissue disease. And from what I read and feel I am

> > pretty sure he's right. I will probably have the tests done at some

> > point but not yet.

> >

> > I don't know why in particular I tuned back in tonight but was

> > saddened to read 's post. Godspeed, .

> >

> > Missed you guys! Bruce, Leanne, Mama-Sher, Z, Babs, Joyce,

> > -Beth, and all my peeps. I hope you have been well and

> > happy.

> >

> > S, Lubbock, TX

> > NSIP w/PF 12/2006

> >

> >

> >

> >No virus found in this incoming message.

> >Checked by AVG - http://www.avg.com

> >Version: 8.0.138 / Virus Database: 270.4.10/1549 - Release Date:

7/12/2008 4:31 PM

> >

> >

>

[Guest guest]

Been doing OK, not great, lately. All of my bloodwork came back for

any specific autoimmune disease. I see my GP doc again the first week

of September, also my pulmo that week. Come to think of it, also the

oral surgeon. I guess it is going to be a busy week!

I did get a diagnosis of arthritis but at least no Rheumatoid. But the

naprosen caused fluid to build up around my heart so we upped the

Lasix. And then the pulmo called in a burst and doxycycline to try to

clear out the chest. It is my goal in life to never had another chest

tube!

It is raining buckets outside. And I mean buckets! This is the first

rain of late summer with a cool front that reminds us fall is in fact

coming. Maybe this week will be cooler. Hope all of you are well.

Welcome to the newbies! I hate you had to be hear but glad you found

us. Our family just gets bigger.

S, Lubbock, TX

NSIP w/PF 12/2006

[Guest guest]

S...the pain patch I am now using is for arthritis as well. I always thought RA was the dreaded type (and well it is. That type can be crippling). This darn osteoarthritis is painful too and my fingers are twisted, some worse than others. My spine is the most painful. I'm noticing now that I'm getting it in my right foot and hip too. Good thing I'm not in the Olympics!

I've been on pain meds for so many years now they are just a part of my life. I don't feel loopey either.

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Hi all> > > Been doing OK, not great, lately. All of my bloodwork came back for > any specific autoimmune disease. I see my GP doc again the first week > of September, also my pulmo that week. Come to think of it, also the > oral surgeon. I guess it is going to be a busy week!> > I did get a diagnosis of arthritis but at least no Rheumatoid. But the > naprosen caused fluid to build up around my heart so we upped the > Lasix. And then the pulmo called in a burst and doxycycline to try to > clear out the chest. It is my goal in life to never had another chest > tube!> > It is raining buckets outside. And I mean buckets! This is the first > rain of late summer with a cool front that reminds us fall is in fact > coming. Maybe this week will be cooler. Hope all of you are well.> > Welcome to the newbies! I hate you had to be hear but glad you found > us. Our family just gets bigger.> > S, Lubbock, TX> NSIP w/PF 12/2006>

[Guest guest]

Beth,

can you tell me why both my posts this morning aren't there???? Just

sent them and they did not show up, I DID press Send.

mlp

>

> ,

> It's so good to hear from you again! I'm glad you're hanging in

there in spite of the slings and arrows that life throws at all of

us.  And by the way, we share that goal...NO MORE CHEST TUBES!!

>

>  Beth 

> Age 48 Fibrotic NSIP 06/06 UCTD 07/08

>  

> Change everything. Love and Forgive    

>  

>  

>

>

>

> Hi all

>

>

> Been doing OK, not great, lately. All of my bloodwork came back for

> any specific autoimmune disease. I see my GP doc again the first

week

> of September, also my pulmo that week. Come to think of it, also

the

> oral surgeon. I guess it is going to be a busy week!

>

> I did get a diagnosis of arthritis but at least no Rheumatoid. But

the

> naprosen caused fluid to build up around my heart so we upped the

> Lasix. And then the pulmo called in a burst and doxycycline to try

to

> clear out the chest. It is my goal in life to never had another

chest

> tube!

>

> It is raining buckets outside. And I mean buckets! This is the

first

> rain of late summer with a cool front that reminds us fall is in

fact

> coming. Maybe this week will be cooler. Hope all of you are well.

>

> Welcome to the newbies! I hate you had to be hear but glad you

found

> us. Our family just gets bigger.

>

> S, Lubbock, TX

> NSIP w/PF 12/2006

>

[Guest guest]

ML...well I see you "up" and ready to go!

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Hi all> > > Been doing OK, not great, lately. All of my bloodwork came back for > any specific autoimmune disease. I see my GP doc again the first week > of September, also my pulmo that week. Come to think of it, also the > oral surgeon. I guess it is going to be a busy week!> > I did get a diagnosis of arthritis but at least no Rheumatoid. But the > naprosen caused fluid to build up around my heart so we upped the > Lasix. And then the pulmo called in a burst and doxycycline to try to > clear out the chest. It is my goal in life to never had another chest > tube!> > It is raining buckets outside. And I mean buckets! This is the first > rain of late summer with a cool front that reminds us fall is in fact > coming. Maybe this week will be cooler. Hope all of you are well.> > Welcome to the newbies! I hate you had to be hear but glad you found > us. Our family just gets bigger.> > S, Lubbock, TX> NSIP w/PF 12/2006>