Re: Re:scleroderma - Lynne, Delores, and others

[Guest guest]

Helolo Gail,

 

I have pulmonary fibrosis,but since I am on Minocin (brand name) and Biaxin I

have been stable and my lungs have actually improved from three years ago. My

cough has lessend.

Maybe there are a lot of pollen in your area and that may cause the cough to

increase.

I do not have sleroderma, so I am not sure if you have more problems with it.

 

Eva

From: ONYX8257@... <ONYX8257@...>

Subject: rheumatic Re:scleroderma - Lynne, Delores, and others

rheumatic

Date: Sunday, April 5, 2009, 6:16 PM

I had a question for those with scleroderma. I, as most of you probably know

have diffuse systemic scleroderma. My breathing leaves a lot to be desired,

especially after going up steps. My dry coughing has increased quite a bit

the past week or so, and wanted your opinions.

Could the dry cough be just a result of the scleroderma and sjogrens, or is

it always indicative of pulmonary fibrosis?

Also, have any of you had pulmonary fibrosis, and if so, has it worsened

dramatically, or has it stayed stable for a period of time.

I would truly appreciate any input anyone could give me.

Thanks Gail

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[Guest guest]

Hello Gail,

I had a dry cough that lasted for more than a year and went away after two weeks

of biaxin followed by mino,

m,w,f for a few months.

of course I continued mino after the cough was gone because OF THE RA.

what I notice is that the dry cough returns after long flyghts oversees if I am

off the protocol.

EMAILING FOR THE GREATER GOOD

Join me

rheumatic

From: holloway-eva@...

Date: Sun, 5 Apr 2009 16:23:47 -0700

Subject: Re: rheumatic Re:scleroderma - Lynne, Delores, and others

Helolo Gail,

I have pulmonary fibrosis,but since I am on Minocin (brand name) and Biaxin I

have been stable and my lungs have actually improved from three years ago. My

cough has lessend.

Maybe there are a lot of pollen in your area and that may cause the cough to

increase.

I do not have sleroderma, so I am not sure if you have more problems with it.

Eva

From: ONYX8257@... <ONYX8257@...>

Subject: rheumatic Re:scleroderma - Lynne, Delores, and others

rheumatic

Date: Sunday, April 5, 2009, 6:16 PM

I had a question for those with scleroderma. I, as most of you probably know

have diffuse systemic scleroderma. My breathing leaves a lot to be desired,

especially after going up steps. My dry coughing has increased quite a bit

the past week or so, and wanted your opinions.

Could the dry cough be just a result of the scleroderma and sjogrens, or is

it always indicative of pulmonary fibrosis?

Also, have any of you had pulmonary fibrosis, and if so, has it worsened

dramatically, or has it stayed stable for a period of time.

I would truly appreciate any input anyone could give me.

Thanks Gail

************ **A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola. com/promoclk/ 100126575x122057 2833x1201387477/ aol?redir=

http:%2F% 2Fwww.freecredit report.com% 2Fpm%2Fdefault. aspx%3Fsc% 3D668072%

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[Guest guest]

Hi Gail, I also have Systemic Diffuse Scleroderma complicated by Pulmonary

Fibrosis. In 2005, I was told I didn't have long to live and they suggested I

start on steroids and chemo to " keep me comfortable! "   I refused and flew to

Boston to see Dr. Trentham and started on Minocin.  I had been put on Plaquenil

for the musclular inflammation which was extremely

painful.  18 months later the same docs that had made that suggestion were

surprised to see how well I had done on the antibiotics.  Not only was the

inflammation gone, but the lungs were in a healing mode.  My energy was back and

most of my other symptoms were gone.  I, too had a cough and a terrible itch. 

Sometimes I scratched my legs so hard they bled.  That is all behind me now and

I am doing well.  The lungs have some permanent damage which may heal in time,

but my breathing is great. My O2 Saturation is 100% on room air and all

pulmonary function tests show some improvement each time they are done.  keep up

the antibiotic.  That is the only thing that helped me.  I also had asthma for

many years before that and had a nebulizer. Anytime, I feel like I'm having a

problem with asthma, I use the nebulizer with normal saline and no other

vasodilators. It loosens the mucus and helps me get my pipes cleared. I do the

same with a cold. 

It has worked beautifully for me since then. That was 4 years ago and I am

better today than when I was diagnosed.  There is hope.  Take care, Dolores &

Mike

From: ONYX8257aol (DOT) com <ONYX8257aol (DOT) com>

Subject: rheumatic Re:scleroderma - Lynne, Delores, and others

rheumatic@grou ps.com

Date: Sunday, April 5, 2009, 6:16 PM

I had a question for those with scleroderma. I, as most of you probably know

have diffuse systemic scleroderma. My breathing leaves a lot to be desired,

especially after going up steps. My dry coughing has increased quite a bit

the past week or so, and wanted your opinions.

Could the dry cough be just a result of the scleroderma and sjogrens, or is

it always indicative of pulmonary fibrosis?

Also, have any of you had pulmonary fibrosis, and if so, has it worsened

dramatically, or has it stayed stable for a period of time.

I would truly appreciate any input anyone could give me.

Thanks Gail

************ **A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola. com/promoclk/ 100126575x122057 2833x1201387477/ aol?redir=

http:%2F% 2Fwww.freecredit report.com% 2Fpm%2Fdefault. aspx%3Fsc% 3D668072%

26hmpgID

%3D62%26bcd% 3DAprilfooterNO6 2)