I have Scleroderma/Lung Fibrosis and have had 6 Cyclophosphmide infusions. I am now on Mycophenolate 500mg.

[Carolanne]

This dosage has been increased to 500mg twice daily this past week and I have suffered adverse reactions.

Do others suffer from adverse reactions to this drug. I have severe headaches itching all over my body and pain in my stomach. These reactions have started after the increased dose.

[lakemon]

I also have Sclerodermna/pulmonary fibrosis/pulmonary arterial hypertension and have been on mychophenolate for 7 months (2000 mg a day). I have had a few headaches but nothing that can;t be controlled with Tylenol (can't take nsaids because of GERD. I would check witht he Doc and see if he would suggest going back to 500mg a day. I am also on Letairis for the PAH for two months and have experienced a few side effects with this drug but nothing I can 't tolerate. I am curious, do you live in the US? I have not been in contact with many people who are taking Mycophenolate for fibrosis.

[Carolanne]

I live in England. I have just been for a blood test, which I have weekly since starting Mychophenolate 3 weeks ago..... and seen my specialist who has reduced the dosage to 500mg. He says perhaps I need more time to adjust to taking this drug. I have excellent care from my local hospital and also see a scleroderma specialist at the Royal Free Hospital in London twice yearly. The hospital in London is a research Hospital.

[CharleneakaCharlie]

I took a treatment of Cytoxan (6mos) by infussion for the pulmonary fibrosis. The fibrosis was effecting both my right and left lung.The reason for the Cytoxan was to stop the infection from the scleroderma that was causing fibrous in my lungs. Now, I'm done with the treatments and have just been put back on Mycophenolate 2000 mg a day to try and keep the infection from the scleroderma causing more fibrosis in my lungs. I may get a headache here or there but, nothing a couple of Tylenol can't cure.

[Carolanne in reply to CharleneakaCharlie]

thanks for that, I am seeing my specialist today and will discuss the drug. I seem to be on a much lower dose, just 500mg..... but then I suppose they will want to increase it.