"The most striking result has been the reversal of widespread sclerodermatous pulmonary lesions

[redrock]

This is a quote from page 73 of “Scleroderma: The Proven Therapy Can Save Your Life.”

Can someone please tell me what sclerodermatous pulmonary lesions are? I have googled this term all over the place and cannot find anything. I am very interested to know because I have mild pulmonary hypertension and I want to know, if these sclerodermatous pulmonary lesions are causing the PH, whether AP alone is going to help me or am I going to have to go on meds for the PH also. I saw a PH doctor on Friday and he said 3 more points on the pressure scale and I need to be medicated. Which upsets me greatly because: 1) I have no symptoms of PH; 2) The meds are expensive; and 3) The meds are toxic.

I've only been on AP for a week and I wonder how long it will take for the mino to work on these sclerdermatous pulmonary lesions, if that is what I have. Because I don't have a lotta time before they dose me up with some toxic bandaid.

[richie]

Hi–Sclerodermatous pulmonary lesions are lesions on the lungs due to scleroderma –it is related to fibrosis —-pulmonary hypertension is a different problem that involves the arteries going to or in the lungs

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I dont know where you received your information but meds used to treat PH are not toxic —Rather they have helped save many lives —these meds are tracleer –flolan and others —-Also used is revatio which is another brand name of viagra –if that is  toxic  I would suppose 40 million men would be sick or dying !!!!!
There is no way to way to gauge how long it would take for the ph to improve –the first priority would be to insure it doesnt get worse –I would strongly urge you to get rid the incorrect idea  that meds used to treat ph are toxic and heed the advice of the lung doctor —-The antibiotic approach to diffuse scleroderma is not a quick turn around –while some folks have had dramatic results in a short duration –it really is a long -term treatment that could well span years !!!
richie

[redrock]

People on Letairis are required to have monthly liver tests. The fact that I will have to have my liver tested monthly to see if it is being damaged tells me there is a toxicity issue. And there have been reports of Viagra causing blindness. Again, to me, this is a toxicity concern.

 

[Maz]

[user=2547]redrock[/user] wrote:

Can someone please tell me what sclerodermatous pulmonary lesions are?

 

Hi Redrock,

Richie is far more knowledgable than I about scleroderma as he's lived it and now in remission. My take on the “sclerodermatous pulmonary lesions” are that they are caused by a build-up of collagenous scar tissue in the lungs….lung fibrosis, as Richie said.

Have you done any research on NAC for your lungs and also asking your doc about adding azithromycin to your minocycline?

NAC (N-acetylcysteine) can be of pharmacuetical grade (rx'd by your doctor) or bought as an over-the-counter supplement. It's being used by cystic fibrosis patients and has shown very good results as a mucolytic. It's also a precursor to glutathione, one of the body's master detoxifiers, manufactured in the liver.

http://en.wikipedia.org/wiki/N-acetylcysteine

Azithromycin is a broad spectrum macrolide with both bacteriostatic and bacteriocidal props…thought to be excellent for the lungs and makes for a nice complement to minocycline in pulsed or daily doses:

http://en.wikipedia.org/wiki/Azithromycin

Peace, Maz

[redrock]

I'll ask my AP doctor about that, thanks.

I have done some research. This article from the scleroderma foundation seems to indicate that PH is caused by the fibrosis and not a separate issue:

http://www.scleroderma.org/medical/pulmonary_articles/connolly_2002.shtm#lung

Lung Involvement in Scleroderma
Scleroderma can cause serious complications in the lungs in two major ways. The first and more common is interstitial lung disease. The second is pulmonary arterial hypertension (PAH).

Pulmonary arterial hypertension occurs when the blood vessels that supply the lungs constrict, or tighten up. It is more difficult for blood to get through to the lungs, and the heart must pump harder to overcome the resistance.

As time passes, scarring (or fibrosis) of the vessels makes them stiffer and thicker, and some may even become blocked.

The extra stress causes the heart to enlarge and become less flexible. Less and less blood is able to flow out of the heart, through the lungs, and into the body; and the symptoms of PAH begin to show.

 

[richie]

Hi
Pulmonary fibrosis generally occurs within the lungs due to scarring  excessive build-up of collagen etc . ….-PAH is elevated pressure within arteries supplying the lungs —OVER TIME this can lead to fibrosis of those arteries —-as I  mentioned two seperate issues —
richie

[redrock]

Well, my AP doctor thinks differently, but thanks for your input.

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