Cyclophosphamide ? I saw my rheumy today and he wants to stop my methotrexate tablets and give me Cyclo infusions. Any advice on this drug.

[Helen58]

I have Scleroderma, Sjorgens and CTD. My joints are getting worse. I would be grateful to hear from anyone who has had these infusions, side effects and benefits. Thanks. helen.

[suehospital]

How long have you been on methrotrexate helen

[Helen58]

Hi Sue

I have been on Methotrexate since Dec 2013 and will keep on it till they arrange the new treatment.

[queen]

I was diagnosed with Scleroderma, secondary raynaud's two year ago my ILD just develop gradually. I have had 6 months of cyclophosphamide, last year followed with Azathioprine which I take on a daily basis, steroids and other medication for raynauds and reflux. Since treatment my lung function has improved and at the moment I could do much more activities that I did last year. I also had a course of light therapy which has help with the tightness and improve the condition of my skin no end. I still suffer from fatigue but not as bad as before treatment. Treatment was not so bad, you and get very tired and sick during and after treatment but I did receive medication that really help with the sickness. The first 3 treatment I was able to continue to work after a couple of days rest after treatment, however by the 5 and 6 treatment I had to take a couple of months as I got too exhausted. I would say the treatment as really improved the quality of my life. If you have anymore questions please do not hesitate to contact me.

[Helen58 in reply to queen]

Thank you so much for the feedback, the general consensus seems to be that it is not a walk in the park but worth it nether the less. I will also follow up n the light therapy. Thanks again Queen. Helen