Sklero and the lungs

[annmarie72]

as anyone developed skleroderma on there lungs just been told I have in right lung 20% really taking it's toll on me doctor wants me to go on chemotherapy based medication does anyone here take these

[nannysue1950]

I have fibrosing alveolitis. When I was first diagnosed (in 2001) I had a cyclophosphamide infusion for 6 hours once a month for 6 months. I was told that this would help to stabilise my lungs and it seems to have worked. Although, as you have seen from my reply to your 'flying' question obviously my lungs have got a bit worse over the years and I will now need in-flight oxygen but for everyday living I'm fine. What exactly are you being offered by your doctors?

[AshtonRains]

Hello AnnMarie72, I recently got diagnosed with Systemic Sclerosis in March of this year, and have been taking 2g a day of Mycophenolate for the past few months, which hasn't worked for me, so they have now suggested that I have an infusion once a month for six months, similar to the lady above I think. Do not worry yourself about it, if you stress and get anxious, you'll only make yourself more ill. Try to stay calm, and enjoy your life. I've found that getting worried about everything, just makes things worse... so take a deep breath and try any new tablets/infusions they throw in your direction! If you'd like anyone to talk to about this, email me Ashton x

[lifeforce]

when diagnosed in 2000 i could barely breathe, dr. started me on methotrexate and prednisone. i have lost some lung power but it is much better than before.make sure you dont smoke,it makes it worse.

[annmarie72]

I was put on a infusion for 2 weeks now on 3 different nebs and inhalers also uniphyllin my mede have tripled every month since getting this horrible disease xx