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Hi all

The doctors want to start me on Azathioprine long term as my lungs are worsening again. I have had cyclophosphamide in the past which stabilized them for a while but knocked me around a bit. Which is the best option? Kiwi

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Hi Kiwi,

 

As Amanda says I do have experience of both Cyclophosphamide and Azathioprine. :)

 

I had 6 monthly infusions of Cyclophosphamide which had (for me!) remarkable results. However, my consultant told me that 6 infusions was the most they could do at that time as it was such a strong drug and the side effects after that would out weigh the benefits. I was then put onto Azathioprine (and am still taking it) and I've had an improvement in my lung function since being prescribed it in January 2009. I'm also taking Prednisolone so I think the improvement is partically due to the combination of both drugs.

 

I did have a problem in the beginning with the Azathioprine raising my liver enzymes but that was solved by reducing the dose I was on but unfortunately my last blood test threw up a problem with my MCV (Mean Corpuscular Volume) levels which my doctor is going to investigate so I'll be having more blood tests. (Just call me the human dartboard!! ;) ) It may have nothing to do with the Azathioprine though. :emoticon-dont-know:

 

I have found the drug very effective but would emphasise that different drugs work differently for different people so can only let you know my experience.

 

We have a link here to Cyclophosphamide and Azathioprine which I hope will be helpful to you. :)

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Kiwi,

Isn't is wonderful being able to talk to someone with experience in a drug! Jo - I'm thrilled that Azathioprine (Imuran) has helped you. From the two studies listed here on ISN it does appear that Azathioprine as a maintenance drug after cyclophosphamide (CYC) has proven to be effective. However, as a drug by itself in the treatment of scleroderma lung, the results of one study were not good. So please read both the studies in the link provided and discuss these with your doctor. I was on Azathioprine for 3 weeks and couldn't tolerate it; however, for many it is apparently a very tolerable drug.

 

I'm sorry to hear that your lungs are worsening and because of that it is definitely a MUST to try to stop it! When my lungs started to worsen I was put on Imuran, then oral CYC but couldn't tolerate either. After researching other options, I convinced my doctors to try Cellcept. I took in the little, but positive research that has been done with it and they agreed to try it. That was 4 years ago and my lungs are stable and I am now slowing come off the cellcept. So that's another option you might discuss with your doctor.

 

Hope you find something that works for you! Let's us know what you decide and how you are doing.

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I agree with Janey. Ask/tell your doctors about Cellcept. Both my sclero specialist and my pulmonary doctor (Virginia Mason Seattle) swear by it as a first defense against the progression of lung and skin involvement. I have been on it for 5 years and my lungs have remained stable and my rheumatologist is impressed with what little skin involvement I have had.

 

Best wishes to you!

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