Medications and Remission

[Psyborg]

I am not there yet, but I am feeling pretty hopeful that I'm going the right way. So I am curious what sorts of medication I'll find myself on when I get into remission? As far as I can tell we still have to take some meds to ensure that we don't re-develope the disease (though a flare is obviously always going to be a possibility). I am just curious what sort of treatment we find ourselves in long term if we are not currently in a flare.

[Sangye]

Psyborg, it isn't a given that you'll have to stay on any drugs to maintain remission. I did two rounds of rtx (5 mos apart) and I'm not on anything. Dr Seo thinks it'll be sufficient to just repeat the rtx a year after the last treatment. I might be able to go even longer than that.

If you do need to stay on an immunosuppressant, Cellcept, mtx or imuran are the usual choices.

[Jack]

As Sangye says, at best you will be on nothing at all. I think the first step up from there is Bactrim, then Cellcept and Prednisolone.

[Sangye]

I think Bactrim is only for those with sinus involvement. I was only on it while taking ctx.

[Luce]

I've had 4 doses of rtx and am very close to remission, I've just been put on 100mg Imuran as the rtx will start to wear off soon. If it works (I flared on Imuran before but that was straight after ctx when the disease was much more active) we'll gradually reduce my Imuran dose to a maintenance level of 25mg-50mg along with as little pred as I can tolerate. I'm on 6mg at the moment and don't feel ready to drop any further as I'm still feeling quite tired by the afternoon. I'm also on a stomach protector and blood pressure meds, so doubt I'll be drug free anytime soon.

To be honest I'm not feeling great on Imuran, lots of upset stomachs and light-headedness. I'm hoping that if it isn't suitable we can switch to Cellcept before I begin to flare, especially since the renal clinic that are my primary carers refuse to pay for any more rtx unles my kidney function decreases. They are saying it should be the respiratory team that should pay as that is where the disease first presesnted, however respiratory wouldn't pay for the first lot because my lungs weren't beinng affected. If I need rtx again I'm going to try and get referred to Rheumatology as hopefully they'll treat the disease as a whole, instead of my current consultants who are ony interested in their specific areas.
Renal originally agreed to treat me as they had WG experience and wanted to be in complete control, now I'm costing them money they don't seem so keen.

[Psyborg]

Thanks all, was just curious. I have my fingers crossed, the doctor says I'm reacting exactly as I should to everything, so I hope that means I'll be able to get back to something resembling "normal" again soon. Soon being at least two months...gee I have a new "Soon" now too

[elephant]

That sounds great Psyborg. I'm crossing my fingers and toes for you that "normal" close to it will come.

[elephant]

Luce sounds like your doing well. My body didn't like Imuran either...cellcept seems to work for me.

[jola57]

Luce, hopefuly cellcept will be better.
Psyborg, I have been on mtx for the past year and they way my rheumy talks it will be my maintenance drug if necessary. I think a lot is contingent on how well you do on what drug. the best way of being in remission is NO DRUGS at all. So here's hope you get there

[JanW]

Yes, Psyborg, if you respond well, you can still believe that at some point, you will be off all drugs, and as I heard Sangye's doc say at the conference, vasculitis patients deserve the right to be off drugs in an attempt to maintain a drug free remission, because long term immunosuppression is not without its own risks. I know Jack has said and others have concurred that if you know your body and start going into a flare, you can get it seen to sooner because you know how WG acts in your body.

I've never had Bactrim mentioned to me, either, and I've had no sinus involvement since before my initial diagnosis.