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#1 Lynda

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Posted 04 June 2007 - 05:12 AM

Have been diagnosed with Pulmonary Fibrosis have under 50% lung compacity, caused by Sclerodema. Have Reflux and Raynaud's. Presently taking Adalat. doctor wants to put me on Prednisone for Pulmonary Fibrosis. But at this time does not know how fast this is progressing and Prednisone is to slow the progress.

From what I have read of this drug I am considering the pro and cons of using it. I feel fine now only the tired, achy feeling, the cough and shortness of breath. Why take a drug that will make me feel worse?

Would like some feed back on how others are dealing with these drugs.

Lynda

#2 janey

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Posted 04 June 2007 - 05:57 AM

Lynda,
I'm sorry to read that you have been diagnosed with pulmonary fibrosis. Having had the same diagnosis, I know how hard it can be both mentally and physically. We do have a page on treatments for pulmonary fibrosis that you might want to look at. There have been some very successful studies in using drugs like cytoxan (cyclophosphamide), oral and intravenous, and cellcept (mycophenolate mofetil). I originally was put on oral cytoxan, but didn't handle it very well. I'm now on cellcept. After 3 months, I can already tell a small difference. My last pft showed stable results which was the first time in 3 years, things hadn't decreased. I'm looking forward to my next pft. I believe it's going to show an improvement in lung capacity (currently 50%) and other factors.

In reference to using prednisone for scleroderma patients - you might want to take a look at our page on Medications for scleroderma (steroids). It has a strong warning against the use of prednisone.

"Corticosteroids (such as prednisone) strongly increase the short-term risk of developing scleroderma renal crisis (kidney failure). It also causes a 70 percent increased risk of developing pneumonia. It is crucial to avoid corticosteroids in patients with systemic scleroderma."

My rheumatologist is deadset against me being on more than 5 mg/day of prednisone. Other's have tried to increase it but I always have them consult the rheumatologist (my lead doctor) and he always says "NO." So that's something you probably should look into and discuss further with your doctor.

Please let us know what you decide and how you are doing. We're here to provide lots of hugs!

Big Hugs,


Janey Willis
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#3 TJ903

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Posted 04 June 2007 - 07:25 AM

Lynda,

Have the same problems and was on CellCept for six months - no improvement for me. I started Cytoxan a couple of days ago and am working up to my full dosage. Hope I can handle it, what I can't handle are steroids. Be very careful and keep the lines of communication open with your rheumatologist.

My rheumatologist was hesitant to put me on cytoxan because of the side effects, but my sclero is very agressive and fast. I was diag. on Jan 4,2007 and have all the organ involvement, 50% lung, for now minor heart and kidney and have had my eshophagus dialated once and have to go back again. We have to try everything that we can right? We just have to be smarter than the average bear while doing it!

Good luck to you, I'll keep you in my thoughts -TJ

#4 Sweet

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Posted 05 June 2007 - 04:16 PM

Hi Lynda,

I don't have this problem and I see Janey has given you a few excellent links, but I wanted to tell you I'm sorry you are have such decreased lung capacity. I know many have it and are treated successfully. I will wish the same for you.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 jefa

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Posted 05 June 2007 - 11:00 PM

Hi, Lynda. I see you have been giving some excellent advice by Janey and others, especially the note about prednisone. There are so many things to consider with the broad spectrum of symptoms dealt to sclero patients. What may seem like a great treatment for some symptoms can create other life threatening risks. Working with all of your doctors to come up with the optimum solution is a real balancing act. At the end of the day, you are the only one who can make the decision. Good luck with it.
Warm wishes,
Jefa

Carrie Maddoux
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#6 peanut

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Posted 06 June 2007 - 04:26 AM

Lynda,
You and I seem to have very similar lungs. Mine are 48%. In my experience Prednisone is helpful but after 6 months I started really feeling the side effects: weight gain, weird appetite, fidgetiness, etc. After a few weeks of prednisone I started six months of Cytoxan IV, which ended in March. I'm glad I did the cytoxan. It really put a halt on my lung progression. I'm still on prednisone - 25 lbs heavier with chubby cheeks, but without it I would never stop coughing. Currently, I’m working on weaning off of it which can be a difficult. You just have to go really, really slow.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#7 Lynda

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Posted 06 June 2007 - 05:38 AM

Hello Peanut thanks for responding. I won't know till Oct when I have my second pft at what rate this is progressing. This will be my deciding factor whether or not I start this Prednisone ( just don't like it) My doctor gave me Alesco ( a puffer) once in morning and at bedtime this really has helped with the coughing and phlemn.
Lynda

#8 Gidget

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Posted 06 June 2007 - 07:42 AM

Lynda,
I have lung involvement and am taking IV Cytoxan. I have had 3 of the 6 doses and the doctors are now increasing the dosage amount for the final 3. For the first time in a year, my most recent PFT came back the same as the one 3 months ago - which to me is really good news. I do have a cough but only when I do not take care of my acid reflux like I should ie. snacking late at night. I hope your rheumatologist specializes in Sclero. Regards. Gidget

#9 Clementine

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Posted 06 June 2007 - 08:37 AM

Lynda,
Very sorry to hear about your lungs. I wanted to tell you that I've been on Cellcept for almost two years, and my Dr. has called me a Cellcept success story. My DLCO started out at 48% when I was at my worst and not on meds. NOw that I believe I have the disease under control (as much as one can, anyway) my lungs are slightly better and stable.

It's good that you are posting to learn about medication and other's stories.
Take Care,
Jennifer

#10 barefut

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Posted 06 June 2007 - 06:12 PM

Hi Lynda,

I have taken Cellcept for about a year and a half now and at my last pulm. doctor. visit he said my lungs have remained stable over the past year (at 70% diffusion).

I take 5mg Prednisone daily but would not want to go any higher. The pred helps me a lot in getting through my days.

Did your doctor mention any other medications to you? I wonder why he has not started you on Cellcept or Cytoxin but went straight to the Pred?

I'm not a doctor of course but I have never heard of Prednisone being used to slow progression usually immunosuppressants are used to slow progression.

Prednisone would be used to reduce inflammation....and it helps a lot with my range of motion and mobility.

Good luck to you and I'm sure you will be feeling better soon!

Take Care and keep us posted,
Barefut