Re: Re: transplant doc

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Judy

not sure how it works, but they are finding that cellcept is helping people with pulmonary fibrosis

back track: my pulmonary fibrosis is responsive to increased prednisone

right now i am on 40 mgs of prednisone

so to decrease the prednisone, they put me on cellcept, 500 mgs twice a day for two weeks, blood test, then 1000 mgs twice a day, then blood tests once a month

when the 1000 mgs begins, i can decrease the prednisone by 5 mgs per day down to 10 mgs. per day

since you have not been reading the posts recently there are a few people on the board who are taking cellcept for treatment of pf

they said that it has made a difference

i have been on it for 1 week, have not noticed a difference yet

but if it works like prednisone, it might take a couple of weeks to kick in

Dapsone is relatively reasonably priced

Mepron is extremely expensive -- with my current prescription plan it will cost me $1000 .-- month

My medical insurance changes January 2009

My copay or coinsurance for it will be less, but i will reach the GAP or donut hole quickly

after the transplant it should be covered under medicare part B

i have noticed a slight tremor in my hands, i hope it doesn't get worse when the cellcept dose increases

which antibiotic are you on to prevent infection?

i did try to look up the relationship between cellcept and pf on line, but didn't find what i was looking for and there is too much to read--if i don't see it right away, i stop the search

when first diagnosed, they put me on Immuran, an immuno, but i had a reaction to it so it was discontinued

in the meantime, when the prednisone dose goes up, the blood sugar levels go whacky

so now i am dealing with that, hopefully i will be able to get it under control with diet and maybe when the prednisone dose goes down

this disease sucks!!!

Pink Joyce IPF 3/06 Pennsylvania

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Subject: Re: transplant docTo: Breathe-Support Date: Wednesday, December 17, 2008, 5:17 PM

Joyce, Why did they put you on CellCept before you have a transplant? That is an immune supressant. I never got it until I had my transplant. How many mg do they have you taking. I am taking 1000 mg twice a day. It contribues to tremors, but I finally got myself off of Klonopin and off of Xanax, both of which I was taking to help control the tremors.Judy IPF 11/06 TX 8/07>> saw transplant doc yesterday> informed him that i am ready to list> > informed him about change in O2 levels since going on Cellcept and Dapsone last week> he said that Dapsone can cause decrease in O2 levels and told me to stop taking it> then he prescribed Mepron> > when the nurse checked

my vitals prior to seeing doc, the O2 level stayed at 93% while sitting with oxygen on> > last monday when we went to the holiday party at lung transplant center, i walked quickly from garage to party location with no problems> yesterday, when i did the same walk, i was huffing and puffing and slowing down> > i have also been in contact with pulmonary doc nurse about change in o2 levels> nurse called me back as we were driving home from transplant doc appt.> pulmonary doc said to continue with meds> i informed nurse about appt with transplant doc> > yesterday i found out that the two docs have offices next to each other, even though the clinics are in different sections of the hospital> > Bruce--> re: hospital comforts?> some of the hospitals in this area are completely computerized> the docs do

not carry a paper chart with them, they use the computer for everything> > so when I see the transplant doc, he has access to whatever the pulmonary doc wrote in my chart on the computer, etc> > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life>