I was initially put on Azathioprene but it didn't agree with me either. I was never given the test to see if I have the enzyme that metabolises this drug (you're supposed to have this test done before taking Aza'). Consequently my liver toxicity levels went through the roof and I felt dreadful. I was taken off it immediately and put on Cellcept (Mycophenolate) which, thankfully, I could tolerate. However Myco' stopped working on me after 18 months so was put on Methotrexate and it has allowed me to stop the steroids altogether.
Have you had this test? If not, insist upon it. Otherwise you could be damaging your liver.
yes i had the tes ,and i was ok to take it,was only on it 3 weeks and it didnt agree with me,but im told if you take it at night,it may be ok,thats the azathioprine
Hi, I an intolerant to both cellcept and azathioprene but been on methotrexate for many years with just one short break due to concerns about my liver. I inject 20mg weekly which lessens the feeling of sickness the following day. Most important to have regular blood tests to monitor liver function - my consultant requires that I have one monthly. Charlotte
I take Azathioprine, 2 years with no problems so far. I gradually built up the dose, at first I took it 3 times a day but now take 150g split into twice a day. I also took lanzoprazole daily at first but now only take one a week and really don't think I need that.
My chest consultant told me not to take Methotrexate as I have fibrosis of the lung and that is one of the possible side effects of Metho. If you have lung involvement perhaps you could seek advice on that.
Everyone is different though.
There is so much to weigh up on any drug, so gather all the information you can and see what will be good for your case.The important thing is to get the Vasculitis under control. Good luck and I hope you get sorted soon. Let us know.
Like LynneJ, i was taken off Metatrexate after a week because someone suddenly realised I had Fibrotic patches on both lungs. Still on Azathoiprine 175mg daily and for 6 years. I'm still on Lanzaprazole 30mg twice daily.
John was put on Azathiaprine back in 2003 and it did not control the WG at all, he suffered a major relapse, as Lynne says it does not suit everyone..and it is the weakest immune suppressant... so you have to be very aware of what is happening to you and and inform your consultant of any changes which are unusual to you.. John could not have Methotrexate because of the Liver implications.. so for 5 years he took oral Cyclophos, so he experienced the long term effects of Cylophos, "carcinomas of the bladder". John has had 3 ops to remove the carcinomas since 2008. In 2006 John was offered Mycophenolate and up to now this has suited him very well, with no side effects.
So all the drugs to treat WG (vasculitis) do not suit everyone, this it is why it is so important to listen to your body, note any changes and work with your consultant. "
My daughter was taking methotrexate along with other drugs,after a few weeks she felt great,so much better than she had felt for the last four years,I think she was on 10 mg a day then it was reduced to 2.5 ,3 times a week.In the beginning she felt a bit sick,but it was worth it in the long run.hope you get sorted,take care,Sandy
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