Re: Subject:: ANXIETY/ prednisone and pain

[Guest guest]

, my dad has IPF, just diagnosed. He was put on Prednisone and started getting chest pain. Prednisone makes acid of sorts. Ask doctor about antacid. My wife used antacid with Prednisone for her cancer problems. Stay Strong

....as always, we're glad to have you with us but not glad you need to be here.

Hang around. You say you've been reading hundred of posts so you know what names are the board a lot. Bruce leaves tomorrow for an extended trip into June but he is our groovy guru. There are many here who know so much but some of them don't post so much anymore.

Unfortunately, it is not unusual for us to have from unpleasant to horrid stories about the drs who treat us. I do think some of it is because they simply don't know enough about this disease and hate to tell us there is nothing that can be done.

Nevertheless they can be kind and helpful and some of them aren't even that!

I was dx(diagnosed) 3-06 w/IPF and two years later I've remained stable so now the dx is NSIP. No treatment, nothing changed so guess it doesn't really make any difference what it's called.

I am on O2 at night and during the day w/exertion.

You have been through a lot and I hope some answers are soon coming. Do see a good pulmonologist and DO get a second opinion.

Stay with us. You'll like us.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

So glad I've found you all!

Dear lovely people,My name is and I just turned 52. I live in Mansfield, TX and I'm a 6th grade teacher in my last three weeks of school. My story is long and I'm hoping one of you can give me some help and guidance. I am great at giving the same, and hope that I can reciprocate in the future.I've been reading hundreds of past posts for two days seeking answers I wasn't given in this miserable month since diagnosis. In Jan.2007, I had a major coughing spell and had a breathing treatment the night of my dad's visitation at the funeral home. Not having a regular doctor at the time, I went to one of those "doc-in-the box" places where I liked the doctor. Then, last summer, I had a horrible cough and fever twice and was diagnosed by the same doctor both times with bronchitis and put on antibiotics. She never would do a chest X-ray. Flash forward to Dec. '07 when the cough came back in

spades. I had also started losing weight. I went to another clinic and had X-rays, but no pneumonia. Repeat of this in early January. I did get a couple of asthma sprays, cough meds w/codiene, and nose spray, but coughed day and night. By March, I finally made an appointment with a "good" doctor. He also went the allergy route on the treatment, even though I said I'd had fever many times. I had lost 20 lbs. since November '07. By mid-March, I came in demanding that I needed help. He X-rayed me and said I had pneumonia (same DRY cough) More antibiotics, one horrible drug reaction to Cipro, and probably more damage done. Two weeks more and I went back for a follow-up. I said to him that I thought I had Lupus (my internet research) because I was having numb fingers, (Reynaud's, I now know)weight loss, and coughing. No, he said. Then...he did an X-ray, heard the crackles, came back in stricken looking.

He said I might be looking at an autoimmune disease and interstitial lung disease or some infiltrates. WHAT????? Can't anybody see this on X-rays?? He got me in for a sinus scan and set an appt. with a pulmonologist. The pulmonologist ran a RA panel and I tested high in the whole panel, but I only seem to have symtom's of Sjogren's. I had 84% pulmonary functioning. I then had a CT done and an asthma test(of course, negative). This doctor was the worst! He read the CT scan for the first time in my presence (had it two days) and didn't happen to see "severe pulmonary fibrosis" or just didn't care enough. No treatment plan was given, no information except lung scarring from autoimmune disease. He stood the whole time like he was in a hurry. He told me to see a rheumatologist as soon as possible. The next week when I saw her, the nurse read those words to us and I was shocked. I have been on prednisone

for three weeks and feel like I have been thrown out in the water by the medical profession, totally in charge of figuring out what to do physically and mentally. The pulmonologist has since left the location, cancelled all appointments, and in his new location has appointments in June. My PCP has sent all info to UT Southwestern in Dallas to get me on with a great doctor. It could be weeks. Meanwhile, I've had pain and anxiousness, and the need for information. I have been back to PCP, but he does not want to order a scan knowing how much I've been radiated. He told me to watch for signs of a blood clot. I guess I would go to the emergency room with extreme pain. I don't know about exercise, breathing exercises, food to eat, how to sleep at night to maximize breathing, or how to quit obsessing about dying in the next ten years. This has been like a new full-time job. I have friends and some family,

but feel like I'm on a downward spiral.If you've read to the end here, bless your caring heart! I am an English teacher on steroids, so I wrote a lot! Thanks so much for any advice, prayers, direction you can throw my way.

E-mail for the greater good. Join the i¢m Initiative from Microsoft.

E-mail for the greater good. Join the i’m Initiative from Microsoft.

[Guest guest]

Hello, my dad is diabetic( type 2-age 55), now 75 yrs old, has had crackling sounds in lungs for 20 yrs. I didn't know about crackling till last week. @ 2 weeks ago got IPF diagnosis. Major skin rash appeared soon after diagnosis. Steriods were prescribed--prednisone. His sugar hit 340. within day chest pain hit him. He is off Prednisone and was told to take antacid (felt better). He does not sleep. My mom says he has not slept for 50 years. That would be the day after they were married. I wonder if he is just a very lite sleeper? Is there such a thing as very lite sleeper? The six children are scrambling, trying to learn about life with IPF. One ER visit ended with all is ok, all vitals look fine. He has not tried oxygen yet. My moms a smoker, signs of emphazima, has sleep apnea, and was given an oxygen machine to help with sleep. I'm very supprised my pop does not

have an oxygen machine. They went for the sleep study the same day. Maybe it is too soon. I feel like everyone is taking a lets wait and see what happens approach. Maybe this approach is rational. My thought. Try oxygen to improve sleep. What if oxygen will not improve sleep? Is fear keeping him awake? He is super tired. My last question before I try to relax. Is every IPF person a canidate for lung transplant?. Subject: Re: Subject:: ANXIETY/ prednisone and painTo: Breathe-Support Date: Monday, May 19, 2008, 12:39 AM

Hi - Just a big BEWARE regarding Prednisone based on our experience -

it kicked Bud's blood sugars over 300. Not good for a diabetic to go

that high!

Joanie

> ....as always, we're glad to have you with us but not glad

you

> need to be here.

> Hang around. You say you've been reading hundred of posts so you

know

> what names are the board a lot. Bruce leaves tomorrow for an

extended

> trip into June but he is our groovy guru. There are many here who

> know so much but some of them don't post so much anymore.

> Unfortunately, it is not unusual for us to have from unpleasant to

> horrid stories about the drs who treat us. I do think some of it

is

> because they simply don't know enough about this disease and hate

to

> tell us there is nothing that can be done.

> Nevertheless they can be kind and helpful and some of them aren't

> even that!

> I was dx(diagnosed) 3-06 w/IPF and two years later I've remained

> stable so now the dx is NSIP. No treatment, nothing changed so

guess

> it doesn't really make any difference what it's called.

> I am on O2 at night and during the day w/exertion.

> You have been through a lot and I hope some answers are soon

coming.

> Do see a good pulmonologist and DO get a second opinion.

> Stay with us. You'll like us.

> Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.

> Don't fret about tomorrow, God is already there!

> So glad I've found you all!

>

> Dear lovely people,

>

> My name is and I just turned 52. I live in Mansfield, TX and

> I'm a 6th grade teacher in my last three weeks of school. My story

is

> long and I'm hoping one of you can give me some help and guidance. I

> am great at giving the same, and hope that I can reciprocate in the

> future.

>

> I've been reading hundreds of past posts for two days seeking

answers

> I wasn't given in this miserable month since diagnosis. In Jan.2007,

> I had a major coughing spell and had a breathing treatment the night

> of my dad's visitation at the funeral home. Not having a regular

> doctor at the time, I went to one of those "doc-in-the box" places

> where I liked the doctor. Then, last summer, I had a horrible cough

> and fever twice and was diagnosed by the same doctor both times with

> bronchitis and put on antibiotics. She never would do a chest X-ray.

> Flash forward to Dec. '07 when the cough came back in spades. I had

> also started losing weight. I went to another clinic and had X-rays,

> but no pneumonia. Repeat of this in early January. I did get a

couple

> of asthma sprays, cough meds w/codiene, and nose spray, but coughed

> day and night. By March, I finally made an appointment with a "good"

> doctor. He also went the allergy route on the treatment, even though

> I said I'd had fever many times. I had lost 20 lbs. since

> November '07. By mid-March, I came in demanding that I needed help.

> He X-rayed me and said I had pneumonia (same DRY cough) More

> antibiotics, one horrible drug reaction to Cipro, and probably more

> damage done. Two weeks more and I went back for a follow-up. I said

> to him that I thought I had Lupus (my internet research) because I

> was having numb fingers, (Reynaud's, I now know)weight loss, and

> coughing. No, he said. Then...he did an X-ray, heard the crackles,

> came back in stricken looking. He said I might be looking at an

> autoimmune disease and interstitial lung disease or some

infiltrates.

> WHAT????? Can't anybody see this on X-rays?? He got me in for a

sinus

> scan and set an appt. with a pulmonologist. The pulmonologist ran a

> RA panel and I tested high in the whole panel, but I only seem to

> have symtom's of Sjogren's. I had 84% pulmonary functioning. I then

> had a CT done and an asthma test(of course, negative). This doctor

> was the worst! He read the CT scan for the first time in my presence

> (had it two days) and didn't happen to see "severe pulmonary

> fibrosis" or just didn't care enough. No treatment plan was given,

no

> information except lung scarring from autoimmune disease. He stood

> the whole time like he was in a hurry. He told me to see a

> rheumatologist as soon as possible. The next week when I saw her,

the

> nurse read those words to us and I was shocked. I have been on

> prednisone for three weeks and feel like I have been thrown out in

> the water by the medical profession, totally in charge of figuring

> out what to do physically and mentally. The pulmonologist has since

> left the location, cancelled all appointments, and in his new

> location has appointments in June. My PCP has sent all info to UT

> Southwestern in Dallas to get me on with a great doctor. It could be

> weeks. Meanwhile, I've had pain and anxiousness, and the need for

> information. I have been back to PCP, but he does not want to order

> a scan knowing how much I've been radiated. He told me to watch for

> signs of a blood clot. I guess I would go to the emergency room with

> extreme pain. I don't know about exercise, breathing exercises, food

> to eat, how to sleep at night to maximize breathing, or how to quit

> obsessing about dying in the next ten years. This has been like a

new

> full-time job. I have friends and some family, but feel like I'm on

a

> downward spiral.

>

> If you've read to the end here, bless your caring heart! I am an

> English teacher on steroids, so I wrote a lot! Thanks so much for

any

> advice, prayers, direction you can throw my way.

>

>

>

>

>

>

> E-mail for the greater good. Join the i¢m Initiative from

Microsoft.

>

>

>

>

>

> E-mail for the greater good. Join the i’m Initiative from

Microsoft.

>