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Are there other alternatives, besides Cytoxan, for pulmonary fibrosis in scleroderma?
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Alternative treatments to pulmonary fibrosis in sscl other than Cytoxan?
- By Lisandrav1
- Posted October 18, 2009 at 3:23 pm · 9 replies
- In Systemic scleroderma
- Shared with the public
Explore topics in this discussion:
Exercise Pulmonary fibrosis CellCept Diffuse scleroderma Anemia Cytoxan Prednisone Scleroderma
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- By LaurenM
- Posted October 18, 2009 at 4:08 pm
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There is some great information on Pulmonary Fibrosis treatment options on the sclero.org website:
http://sclero.org/medical/symptoms/pulmonary/fibrosis/treatments/a-to-z.htm l.
Some treatments to halt the progression of lung damage that have been mentioned here by others are:
Other Immunosuppresives: Cellcept
Anti-Fibrotics: Gleevec
Stem Cell and more.
Hopefully people with first hand experience and success stories will chime in.
- By ilene64
- Posted October 19, 2009 at 7:55 am
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Hi,
Cytoxan worked at first and then it didn't, so I switched to a high dose of cellcept. My skin progression did not improve until I added IVIG to the mix, but my lung progression slowed down. The IVIG is improving my inflamation, joint and skin issues. They don'dt know if it will help the lungs. I have been told by doctors(although they don't know for sure) that anti fibrotics are promising, but they have not found the right one yet. As far as stem cell, doctors told me that in 2 years people with lung problems can get it back and that it is not worth the risk. Some people though have done it and swear by stem cell. My DLCO is a bit too low to qualify..below 40%...so I don't think about that.
I am being monitored by a transplant team in the event that that is my only choice. It is a last resort and only buys you time when you are near death. Fortunately I am not even close to that. One of the best treatments is Pulmonary Rehab. It is perscribed by your doctor and you learn how to best use your lungs. Sounds easy, but it isn;t. This helps you get the most out of your lungs and keeps you healthy without stressing your heart. The other treatment is oxygen. That also helps enable you to do more and feel better. The folks at the transplant team can't get over how well I am doing given the condition of my lungs. I use O2 at night and on exercise. I try to keep active. also, if you have reflux that can back up into your lungs, so that must be treated so as not to cause more damage.
Hope this helps.
Ilene
- By Lisandrav1
- Posted October 19, 2009 at 5:40 pm
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Hi Illene:
Thanks for your reply. By IVIG do you mean intravenous (needle)? I'm new to all this. I will definitely inquire about Pulmonary Rehab. Thanks again and God bless!
- By ilene64
- Posted October 19, 2009 at 6:07 pm
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Intra Venous Immune Globulins. How it works, I have no idea.
- By LaurenM
- Posted October 19, 2009 at 6:17 pm
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Intravenous immune globulin (IVIG) is a blood product that is administered intravenously. It contains the pooled antibodies extracted from the blood of over one thousand donors. Historically it has been used to treat infections, immune deficiencies and auto immune/inflammatory conditions. I'm not sure how or why it works either. It is a new therapy for scleroderma.
- By vonni
- Posted November 2, 2009 at 3:25 pm
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I would like to hear from anyone who has had cytoxan as treatment for diffuse scleroderma.
- By bulletproof
- Posted November 2, 2009 at 4:21 pm
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Hello,
My first post here so please bear with me. I've been on cytoxan (750ml) and salumederol (sp) (1000mg) administerred once very 4 weeks since the beginning of April 09 along with 15mg prednisone orally daily. I just had treatment #8 and it seems to be getting harder on my body than it was in the early going. I have noticed that my fingers have shrunk down closer to their original size, but the rest of me seems so drained. I did have better PFT numbers after 6 treatments and at UCSF they want me to remain on treatment for at least one year. Cytoxan doesn't make me sick or anything like that, but it does make me tired. I'll just ramble talking about my treatments. Is there something more specific you want to hear about?
- By ilene64
- Posted November 3, 2009 at 11:04 am
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I was on Cytoxan for a few months...oral. I developed severe anemia and high fevers. I stopped the drug, my skin improved markedly. Then after 2 months Sclero symptoms came back. I re-tried Cytoxan. That time it did not help at all. I switched to Cellcept..3gr./day. I do not think that is doing anything either. I added the IVIG so we shall see...
Cytoxan did make me tired, but that was it. I do reccomend it. It is very successful for many people. There is not much out there yet for fibrosis.
- By joykey
- Posted November 4, 2009 at 3:05 pm
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I have been on Cellcept for 2 yrs. now. Doses have changed according to how I am doing. I have retained stability (thank goodness) for 6 months.No known side effects.I say -if it works don't mess with success!
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