SD (Systemic)

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Hi everyone.

I was diagnosed with CREST about 18 years ago!!!

My manifestation of the disease started with just cold hand in which I still

have today and of course my fingers will turn purple if temp is cold. I also

have some motility issues in my esophagus but minimal. I do not choke on foods

or liquids. I do have difficulty if food is dry.

Anyway to make a very long journey short the just of it is in my past few years

what I am experiencing more so is issues in my lungs.

If I had not gone to the Grand Canyon a couple of years ago and attempted to

hike back I would have never really known that my lungs were being compromised.

I have gone to many many doctors and the most sensible one has been a doctor

(pulmonologist) out of UCLA who has stated to me that I do have lost about 50 %

of lung capacity due to lung fibrosis and he states that other than shortness of

breath which occurs frequently based on what I am doing, he does not recommend

toxic drugs. He basically has me come in every few months and go through the

usual test PFT, 6 minute walk, echo,and CT scan. He stated that if he would have

started me on cellcept, cytoxin and other crap I would probably have gotten

worse than somewhat stable.

Anyway, what I have seems to be a very slow type of scleroderma I have been

researching AP protocol the last few months and went to see a AP doctor who

stated that he wants me to start on 100mg minocin five days a week 2x day and

skip Mon- Thurs. He also want to start me on IV of clindamycin 7 days a week and

off 2 weeks and back on.

I have read many dosing protocols and the IV part of it seems excessive. I have

read a week to begin and then one infusion every few weeks. I do not know much

about the dosing but again I am very conservative and do not want to blast my

body that quickly. If anyone does have lung involvement with SD and are on AP

can you share your thoughts on this and how are you doing with the therapy.

Thank you.