4-5 weeks ago my rheumy upped the azathioprine to the highest dose I've been on (200mg per day) , slowly but surely I'm able to do more than I have done for around 9 months. Small steps but able to walk a bit further, spend time with friends and family without arriving home exhausted and spending days recovering. Fingers crossed that this improvement continues, overall I'm still getting pain and fatigue from activity, but with rest I am recovering quicker than before.
I feel positive, great!
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Slowmo
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Other than the usual couple of weeks of nausea and some sickness (but all bearable) which seem to be wearing off now it's been okay. Fingers crossed it continues.
Can I ask if you have organ involvement. I'm on 100mg but I worry about the side effects as I don't have organ involvement I wonder is it worth taking the risks.
HI, I think with immunosuppression we all have different tolerances and thresholds ,if you think a higher dose might help then try it if the side effects outweigh the benefits then you can always drop back again.
Hi codber, no organ involvement thankfully. Other than bearable side effects i've been ok.
I sometimes wonder if being on aza has made things worse, but weighing things up and discussing with my consultant I conclude that the SLE symptoms are the cause and not the meds. Hopefully things are okay for you. I should add that I am a large/heavy lady and the dosage is relevant to weight and is worked out on a mg per kg calculation.
My consultant has said the same to me I do find I have more energy, less joint pain and facial rashes while taking aza. On the down side I pick up colds and virus more easily and my already thinning hair is getting thinner.
Thank you all for the information on aza, just been told I will have tocome off the metho due to bloods dropping and need to start on the aza, so all your comments are very helpful thank you all
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