[Rose Maclean]

Hi all.

I have been round a few mulberry bushes recently, but my rheumy has started me on a new treatment. Pulse doses of Cyclophosphamide, 1gm every 3 weeks for 3 treatments and then starting Azathioprine, with the cyclo every 3 months from then. I have been on 20mg of prednisone daily to rescue me and am tapering down to 10mg. My question is, how long has it taken for you guys who have been on aza to feel the benefits? I am worried about deteriorating while I wait for it to work. The cyclophosphamide is great, but i know how i go downhill without the dreaded pred. Some feedback on what to expect time wise would be hugely appreciated.

Thanks Rose

 

[Katharine]

Hello Rose,

Azathioprine (Imuran) usually starts working within 6-8 weeks with more effect later.

Hopefully the effect from the pulses of cyclophosphamide will carry you through until then.

Maybe someone who has had cyclo can tell you more on that score.

Katharine

 

[lin]

took 2 months or so for me, when i was on it good luck x

 

[Jesse88]

It took about two months for me too, with full effect felt in three, but I read recently it can take six months to a year to get the full effect. I don't think most people have to wait that long though. It's been a great drug for me. I understand your concern about that gap of waiting for the new drug to kick in. I was told to stop the MTX when I started Imuran but had to go back on it because I went bad so quickly and the Imuran hadn't kicked in yet. Not fun, but you are on other meds that should help you while you wait for the Imuran. I'll bet you do just fine.

BTW, some people, like me, have stomach problems with Imuran. I was offered drugs to deal with that but didn't want to take more meds, so I started eating Activia every day. It works on the nausea and my whole digestive system is better. I admit to being so sick of that stuff now, but it's better than more meds. When I'm away from home with no refrigeration I take the new probiotic, Align. It's expensive and that's why I only use it occasionally, but it works the same way as Activia. They are both a God-send.

 

[Rose Maclean]

Thanks everyone. That tells me I am going to have to do something fast! I am only tapered to 15mg of pred a day (supposed to go to 10mg today) and already getting headaches and other neuro symptoms back and I don't even start the azo till later this week! I just don't seem to have a strong response from any drugs. No side effects, but also reduced response. I mean aside from clearing my head beautifully, the cyclo is clearly not responsible for sorting my other neuro symptoms. Does anyone else have this? I have it with all drugs. I have to take much stronger doses of everything to make anything work and it appears to be holding true in my lupus treatment too. I am not going to make 6 weeks at this rate! We are also going on holiday next week and I am ****** if I am taking headaches on holiday! These are those headaches that Mobic suppositories and 3 x 50mg of diclofenac a day cannot make go away. the only thing that has ever worked on them is pred. even pain killers don't work, no matter how strong. Thanks for the tip on the activia. I take probiotics, which I assume are the same thing? As well as oesemeprosole to protect my stomach and stop my GERD.

 

[Rose Maclean]

Update

Thanks for your help everyone. I phoned my rheumy and she has put me back up to 20mg of pred (my magic dosage) and put me immediately onto 100mg of azo. She says we can start the taper again after blood tests after 3 weeks of azo. Thanks for your guidance. I wouldn't have known what to ask otherwise.

 

[Katharine]

That's good news Rose. My rheumy didn't even try tapering my pred until the imuran had kicked in and, due to other problems, I still take both (though I'm on 12.5mg a day now) so they can be taken together if needed.

I hope you have a good, headache-free holiday.

Katharine