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New Medication

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I am in the process of starting to new medication called cyclophosphamide.

I would like to know if anyone used this medication before and how long did they stay on it before they started seeing any good result and how did it make them feel. Did they have any side affects? I have been using Mycophenolate for awhile (1 1/2 years) now and the skin is still the same. Did anyone used something else that helped? I am very confused because I am feeling better and have more movement in my body. Please help


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Hi Sis

I had 6 monthly treatments of IV Cyclophosphamide for my lung fibrosis and in my case it was very successful as my lung function TLCO (oxygen and carbon dioxide transferance) improved from 48% to 73%. I noticed an improvement after the first couple of infusions.

As regards to the side effects it was imperative that I drank copious amounts of water as one of the less pleasant side effects are that cyclophosphamide can cause bladder problems. I was given an anti sickness infusion and drugs to take as it can cause nausea and I was also very worried about losing my hair ( I have long, naturally curly hair and I don't do hair loss!! wink.gif ) but thankfully that didn't happen. I'm also taking a small amount of Prednisolone as well. We have a useful LINK HERE which gives you some more information about the medication.

I assume from your post that you are taking your new medication orally so I would imagine that the side effects (particularly the bladder one) are not so pronounced. I'm now on Azathioprine (another immune suppressant like cyclophosphamide and mycophenolate) which apart from an initial problem with my liver enzymes has also been fairly trouble free.

I do hope that this reply will encourage you; I certainly had a very good result from the drug and hope that you will feel more confident about taking it.

Do let me know how you get on.

Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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I've done 9 months of cyclophosphamide. For me it wasn't for skin involvement of hardness, but for pain; I feel like I have a sunburn on my skin all the time. So it hurts to touch me. cyclophosphamide helped that and then it also helped with the skin on the back of my arms, it is not so rough now. I have severe lung involvement, and we were trying to suppress more damage. I am very confident that cyclophosphamide works well if things are caught in early stages.


I had cyclophosphamide once every 4 weeks. I would do it on Fridays, so that I could rest for Fri, Sat, Sun. Yes, rest all you can. I also had them give me the cyclophosphamide slow to keep from getting a headache after the infusion. The med helped for 3 weeks, and then on the 4th week, I really could tell I needed the med's again. Now I am on Cellcept, which keeps my white count low, and immune supressed just enough.


I wish you good luck with the treatment. I did NOT lose my hair. Thank goodness smile.gif I would do it again in a heart beat! :hug-bear:



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