Azathioprine (Imuran vs.Methotreate (Rheumatrex,Trexal

[Chris G]

Yup, I think we all have the same fear. After my first round of rtx I thought I'd have to go on something in-between rtx rounds but Dr Seo said I don't. I felt naked!

I will be starting Aza again a week after the fourth infusion.

If I'm reading this right, Sangye is not on any "control" meds after rtx infusions, and Phil will be going back on Aza after rtx infusions. I will be weaning off of mtx now that I've completed rtx infusions (along with a couple of other people here). Why the different approaches? Is rtx not working as well for some people as with others? Is there uncertainty because of the lack of long term experience with rtx?

My docs told me we will automatically do another rtx round in 6 months - seems like Sangye is slated for the same thing. Anyone else?

[pberggren1]

Every case is different for sure. I know that in my case we want a long lasting remission and with the M. Abscessus it throws a major complication into the equation. And I think some docs are not to comfortable using rtx yet. But they should get comfortable because I think that is what most Weggies need rather than ctx. I am not saying that ctx is out the window because obviously there will be severe cases where ctx is needed right away.

[Sangye]

AJ seems to be doing well on the Imuran. Not one complaint of nausea. Blood test for liver function will be done next week. Hopefully, this will bring ANCA to negative. I know that the doctors say that the ANCA level isn't a prediction as to whether the disease is active, i would feel better if it was negative. if its not so important, why do they even bother checking?

Dr Seo never checks mine. I think he checked it a couple years ago. Just for kicks.

[Sangye]

If I'm reading this right, Sangye is not on any "control" meds after rtx infusions, and Phil will be going back on Aza after rtx infusions. I will be weaning off of mtx now that I've completed rtx infusions (along with a couple of other people here). Why the different approaches? Is rtx not working as well for some people as with others? Is there uncertainty because of the lack of long term experience with rtx?

My docs told me we will automatically do another rtx round in 6 months - seems like Sangye is slated for the same thing. Anyone else?

I think in my case Dr Seo is trying to minimize using any other drugs unless necessary. I'm allergic to mtx. Cellcept only affects B cells, which the rtx is already taking care of. That only leaves imuran. We've seen that my case of Wegs has to be managed with rtx every 6 months and that I do okay in-between treatments. So there's no reason to put me on another drug.

My Wegs dog is such a light sleeper that I have to do rtx every 6 months, even before my labs show B cells recovery. This is true for some people. They have to figure this out by trial and error, which we've done. Oy, have we done that.

[Sangye]

Every case is different for sure. I know that in my case we want a long lasting remission and with the M. Abscessus it throws a major complication into the equation. And I think some docs are not to comfortable using rtx yet. But they should get comfortable because I think that is what most Weggies need rather than ctx. I am not saying that ctx is out the window because obviously there will be severe cases where ctx is needed right away.

Phil, that is not a true statement about most Weggies needing rtx instead of ctx. Most Weggies are still treated with ctx first and it works great for many of them. Dr Seo said he still feels more comfortable about using ctx first and rtx only if it fails. There are still too many unknowns about the long-term risks of rtx. The preference of ctx is likely to change as rtx is used more, but it'll occur gradually over years as researchers monitor the long-term safety of rtx.

[pberggren1]

Phil, that is not a true statement about most Weggies needing rtx instead of ctx. Most Weggies are still treated with ctx first and it works great for many of them. Dr Seo said he still feels more comfortable about using ctx first and rtx only if it fails. There are still too many unknowns about the long-term risks of rtx. The preference of ctx is likely to change as rtx is used more, but it'll occur gradually over years as researchers monitor the long-term safety of rtx.

Yes it is true Sangye because I said I think.

[Sangye]

LOL The nuance was lost on me.

[pberggren1]

LOL The nuance was lost on me.

Poor nuance.

[drz]

AJ seems to be doing well on the Imuran. Not one complaint of nausea. Blood test for liver function will be done next week. Hopefully, this will bring ANCA to negative. I know that the doctors say that the ANCA level isn't a prediction as to whether the disease is active, i would feel better if it was negative. if its not so important, why do they even bother checking?

It seems to depend upon the person and getting to know their medical history as to what markers or variables mean for that person. For me ANCA seems to correlate well with other markers. I started out with an extremely high number and it gradually dropped to normal range which correlated well with other lab results along the way so for me it seems to be a good indicator. When I had my last minor flare they checked it to see if the flare was serious or minor and then treated it as a minor flare and it got under control in a few weeks. Other wise they don't check it very often. If I get a serious flare then I will get RTX again.