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View Full Version : Azathioprine (Imuran vs.Methotreate (Rheumatrex,Trexal



Red
05-07-2011, 01:41 AM
Just seen my rumy blood work good urine blood neg protein neg. one more iv cytox monday mabe more he say eye flair any thoughts dr says he will start me on Methotrexate or Azathioprine.

Red
05-09-2011, 12:29 AM
Anybody have any thoughts on what drug better or not ?

Jack
05-09-2011, 01:30 AM
Azathioprine worked for me (eventually) with no side effects that I noticed, but that was 20 years ago and I don't think there were any alternatives then as a first step down from CTX. For me the Aza was a stepping stone on the way down to Neoral, a drug you don't seem to hear much about these days. Perhaps because it did not work too well! :wink1:

marta
05-09-2011, 03:08 AM
I have the same question as Red, my rheumy gave me a homework assignment: read up on both and decide which one I think would be better for me, so I'm looking forward to hearing some feedback. I haven't heard too much negatives about AZA but have heard of yucky side effects with MTX - everyone on it seems to get a kick in the but a day or two after taking it, and the stomach issues with it (I'm a total 'stomach issue' whimp - I'll take ten head colds over a stomach flue any day). What do you mean by 'eventually' Jack? Did you have problems when you first started taking it?

pberggren1
05-09-2011, 04:25 AM
I have decided on Imuran this time as a maintenance drug. I was on mtx 2 times before and we are not certain that it had anything to do with the hearing loss but I suspect it did considering how the loss went it is ototoxic as well. And I have flared twice while on Cellcept. I have been on Imuran before as well and tolerated it quite well.

Jack
05-09-2011, 05:42 AM
Due to relapses, I went back onto ctx a couple of times before the aza seemed to be capable of holding the Wegener's back. I then did the aza to Neoral shuffle a few times until I was used in a trial for Mycophenolate which worked a treat. :thumbup:

Sangye
05-09-2011, 07:16 AM
I was only on mtx for 2-3 months before I got the allergic reaction to it (pneumonitis) and had to stop. I was on 25mg injections and didn't notice any side effects at all.

drz
05-09-2011, 09:32 AM
Anybody have any thoughts on what drug better or not ?

It might depend upon your general health issues and history. I had been on RTX, CTX IVs, and oral Cytoxan before my doctor recommended switching to azathioprine since CTX kept knocking down my WBC real low and it didn't seem to be holding the WGs back anymore anyway. You need a lab test that takes awhile to be sure it is safe for you to take azathioprine so be sure to get that first. If you are lacking or low in a certain enzyme Imuran is not an option.

Chris G
05-09-2011, 09:54 AM
I've been on mtx for 6 months. At 20mg oral, I had no side effects at all. When I was increased to 25mg oral, then 30mg, then 30mg injectible, I began to have "mental" side effects the day after - horrible trouble concentrating, felt drunk, like someone had slipped me some narcotics, also feel very restless, and I get headaches. I'm still on it, but now at a slightly lower dose - 25mg injectible. The day after is still no picnic, but it's manageable for now. I'm not sure what doses they use for remission maintenance, but 20mg was really no problem for me at all.

I've tried aza briefly, and apparently I lack the enzyme necessary to break it down (my levels were 14 - in the "ambiguous" range), or maybe my stomach just didn't like it, as I had VERY undesirable side effects - no nice way to put this.......horrible, painful, embarrassing GAS :blushing:

Do some people take Cellcept as a maintenance drug? How does that work for those that do???

elephant
05-09-2011, 10:18 AM
I'm on Cellcept 2000mg, plus cyclosporine, bactrim and prednisone. I am doing ok....stomack is ok. I take nexium every other day.

Sangye
05-09-2011, 11:07 AM
I was on Cellcept 2,000mg for 2 years. I needed to be on 3,000mg.

gwenllian111
05-09-2011, 09:12 PM
Could not tolerate AZO - also, my Rheumy did a blood test to check for something with AZO, can't remember what it was now, but I wasn't allowed to start it anyway. Mtx gave me terrible cystitys (sp?).

pberggren1
05-10-2011, 01:45 AM
Could not tolerate AZO - also, my Rheumy did a blood test to check for something with AZO, can't remember what it was now, but I wasn't allowed to start it anyway. Mtx gave me terrible cystitys (sp?).

Hi Gwen, what is cystitys?

jola57
05-18-2011, 11:13 PM
I have been on mtx for over a year, started with 15mg, went down to 10 because of liver and now on 7.5, again because of liver. No flares and no bad side effects (except liver)

Daggar
05-19-2011, 12:20 AM
Well tomorrow is the big day for Holly. The doctors will be giving us the schedule to switch from ctx to imuran. Any advice? Should we request more frequent lab work if they don't?

Gwen mentioned "cystitis" ... I thought that was more of a ctx side effect?

pberggren1
05-19-2011, 10:21 AM
I would at least have labs done every 2 weeks for a while just to make sure things are going good.

RCOSSIO
05-19-2011, 11:55 AM
Great thread...after ctx, I started Cellcept and after 1yr and about 4 months, Cellcept was reduced from 3000mg to 2000mg. March 2011, I started with minor joint pains, immediately scheduled a bloodwork and my ANCA came back slightly high.
%
He then put me back on 3000mg of Cellcept and up pred to 5mg daily. Two bloodworks later everything showing normal.

However this past two weeks, joint pains went from minor (Defcom 5 to Defcom 3)...pretty serious. Bumped my pred frpm 5mg to 15mg this weekend 5/15.

Did bloodwork today as I scheduled it last week knowing something was wrong and waiting to hear. Should know by Monday.

and for the record..VF studies suggest that Imuran works better than Cellcept in maintaing remission, however I felt we should have kept Cellcept at 3000mg for one additional year.

BTW...my analysis as based on Sangye experience when she demanded to go from 2000mg to 3000mg and Dr Seo delayed. I dont blame the docs, with WG the disease affects so many of us differently and there is not enough of us LAB RATS who WG in the world to get a good understanding. So I will continue to be somebody's Guinea Pig....:w00t:

RCOSSIO
05-19-2011, 11:58 AM
Note to self...check spelling and grammar. I cant believe that i did not proof read prior to sending. Must be the triple increase in pred...affecting this CUBAN BRAIN...where's Fidel, I hate him :predrage:

Sangye
05-19-2011, 12:30 PM
LOL Fidel!

I could only see in retrospect how much I needed to be on 3,000 mg Cellcept. While I was on 2000mg I felt like it was too low, but my labs were great and we always had some explanation for the symptoms I continued to have. Now I know my body and how the Wegs dog plays. Dr Seo also knows he can trust me to know when the Wegs is awake. We both had to learn to trust me, actually!

RCOSSIO
05-19-2011, 12:59 PM
Sangye next time when you visit Flagstaff..throw a frisbee over the Canyons and see if the Weg dog leaps out and chases it over the cliff for good and then you don't have to worry about Cujo coming back to haunt you anymore..PLEASE LET ME KNOW IF IT WORKS. :w00t::w00t::w00t::w00t:

Sangye
05-20-2011, 12:41 AM
No, no... I just wanna get the Wegs dog to go to sleep. A nice lullaby is all he needs. :wink1:

CODavid
05-20-2011, 12:51 AM
For me the MTX did not work. I didn't have any stomach problems, but I have a cast iron gut.

jeriorleans
06-14-2011, 12:23 PM
Daggar, how did Holly do with the Imuran. A.J.'s doctor switched him today because of all the stomach issues he was having with the Methotrexate I have read some bad recent research on Imuran saying that is causes a rare blood marrow cancer.

vdub
06-14-2011, 03:20 PM
I'm on 25mg/week. It's really difficult to seperate out what is wegs, mtx, side effects, or just plain ole arthritis, but 1 to 2 days after taking my mtx, I feel like crap. Aches and pains as if I have the flu. It only lasts two days, sometimes it begins 1 day after the mtx..... Other times it begins 2 days after the mtx..... Not in totally bent over agony, but darned uncomfortable.

Daggar
06-15-2011, 01:38 AM
Daggar, how did Holly do with the Imuran. A.J.'s doctor switched him today because of all the stomach issues he was having with the Methotrexate I have read some bad recent research on Imuran saying that is causes a rare blood marrow cancer.

Hello Jeri -- sorry to hear about AJ's stomach problems. Holly hasn't made the switch yet due to the recent taper of pred -- the doctors wanted to have some time to evaluate that before messing with the immune suppressant. I've heard of the risk of cancer with tnf blockers just like ctx but it is really hard to evaluate based on the very low percentage of patients who report it (i believe 1%). Mtx has its own risks with bone marrow disorders as well. Imuran becomes a necessary risk when the kidneys are involved -- mtx isn't an option. Lab work consistency and watching for any symptoms is the best we can do. Symptoms are very similar to WG (joints/fever/weight loss/skin/etc.) so it is continuing to do the same as usual. I've heard that imuran can cause stomach issues as well so it'll be interesting to see how AJ and Holly do with the switch. The ctx caused Holly a lot of nausea at the start but subsided after a month or so. May need ondansetron again? Double check with the doctors about drug interactions because we've been told that Holly will start on a lower dose of imuran than normal due to this. I believe the rare cancer you are talking about has been reported while taking in combination with "infliximab" for Crohn's.

Chris G
06-15-2011, 01:55 AM
I'm on 25mg/week. It's really difficult to seperate out what is wegs, mtx, side effects, or just plain ole arthritis, but 1 to 2 days after taking my mtx, I feel like crap. Aches and pains as if I have the flu. It only lasts two days, sometimes it begins 1 day after the mtx..... Other times it begins 2 days after the mtx..... Not in totally bent over agony, but darned uncomfortable.


Vdub: What's your folic acid schedule? I found it helpful to take a little extra folic acid the day I take my mtx, and the day after......2mg each day on those 2 days, rather than 1mg. My doc doesn't have a problem with me doing that.

gurinbasra
06-15-2011, 03:21 AM
I have the same question as Red, my rheumy gave me a homework assignment: read up on both and decide which one I think would be better for me, so I'm looking forward to hearing some feedback. I haven't heard too much negatives about AZA but have heard of yucky side effects with MTX - everyone on it seems to get a kick in the but a day or two after taking it, and the stomach issues with it (I'm a total 'stomach issue' whimp - I'll take ten head colds over a stomach flue any day). What do you mean by 'eventually' Jack? Did you have problems when you first started taking it?

I've been on Methotrexate for 2 years now, no issues with me! No side affects, just having to inject it once a week, it takes one big breath and to not think about it too much. But, here's one person who's good on it!

Jules
06-15-2011, 04:04 AM
Made the switch from ctx to aza 3 weeks ago as and reduced pred to 5mg at the same time - made me really sick to start, but huge break through today. . . nausea but no physical sickness! :thumbsup:

vdub
06-15-2011, 04:26 AM
What's your folic acid schedule?
I take 2mg a day on the days that I don't take mtx. Its interesting that you take folic acid on an mtx day. I'm going to have to read up on the mtx/folic acid relationship to make sure I understand what's going on behind the scenes. With any amount of luck, I'll be seeing my rheumy in SLC in a couple days and I'll ask him the question.


no physical sickness!
That is super! :-)

Sangye
06-15-2011, 04:51 AM
Yay for you, Jules! :hug3:

alhartzler
06-16-2011, 02:20 PM
Haven't posted in a while, as I returned to school/clinical and have been doing well. I was on cytoxan for three months, and I just made the switch to Azathioprine. I have started at 100 mg per day, and am weaning down on the prednisone by 5 mg per 7-10 days. Now at 35 mg per day. Other than some tingling to hands and feet, and have noticed that my jaw kind of aches, I am feeling pretty well. Sinuses are pretty much clear, and lung CT came back with only one small 3mm nodule in LLL. (Improved from CT done 3 1/2 months ago prior to cytoxan) I am hoping that I stay in this state with the Imuran. Has anyone else had the weird tingling/numbness, and strange jaw symptoms- especially when chewing, etc.? I am guessing it's due to coming down on the prednisone. Also, wondering what the right dose of Imuran should be? Forgot to ask Dr. Langford at CC, and my rheumy here just started me on 100 mg/day to see how I would tolerate it initially. (rule out allergic reactions) Not sure what she will increase the dose to? Hope everyone doing well!

Jeff vinc
06-16-2011, 02:37 PM
I am on MTX since january 2nd and i have no side effect. I actually have to talk to my doc because i feel like its not working at all for me due to some symptoms that i suspect to be WG.
oral 20mg/wk.
Seems like MTX is not working well for a lot of people actually...

pberggren1
06-16-2011, 02:51 PM
I think you are right Jeff about mtx not working well for a lot of people.

I just started on Imuran at 150mg, based on 2mg/kg of body weight. That is what my doc feels comfortalbe doing and said that it gives me a better chance of a longer lasting remission. He is also a Wegs specialist.

drz
06-16-2011, 03:01 PM
I think you are right Jeff about mtx not working well for a lot of people.

I just started on Imuran at 150mg, based on 2mg/kg of body weight. That is what my doc feels comfortalbe doing and said that it gives me a better chance of a longer lasting remission. He is also a Wegs specialist.

In US they estimate about 1 mg per pound as maximum dosage. They may try get by with a little lower dosage to reduce risk of liver problems and see if the lower dosage will hold you. They generally start out lower and build up to see how you do with it like any new drug.

alhartzler
06-17-2011, 08:38 AM
I guess that seems reasonable about starting lower and increasing if needed, regarding the Imuran. Im scared it won't hold me in remission?! I guess everyone has the same fear when switching/starting new drugs. Unknown territory.

Sangye
06-17-2011, 09:08 AM
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! :laugh:

pberggren1
06-17-2011, 10:12 AM
I will be starting Aza again a week after the fourth infusion.

Kathie28
06-17-2011, 11:56 AM
I just started MTX 3 weeks ago and the only issue I have had is some slight stomach issues for a day after I take it. I actually have been feeling a little better with it so hopefully it is going to work for me. I tried Imuran but unfortunately I am one of those who can't take it. I got pretty sick with it. It was like having a stomach virus and I was out of work for a couple of days.

jeriorleans
06-27-2011, 01:02 PM
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?

JanW
06-28-2011, 01:02 AM
For what it's worth, Jeri, my doc doesn't check ANCA or P3 for me very frequently at all (I go every six weeks). Mine have never lowered substantially and I have been considered as being in remission for more than four months (slowly reducing mtx trying to go drug free). The numbers didn't move much and didn't correlate with other inflammatory markers, or how I was feeling.

Chris G
06-28-2011, 01:49 AM
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! :laugh:


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
06-28-2011, 02:37 AM
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
06-28-2011, 03:11 AM
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. :laugh:

Sangye
06-28-2011, 03:21 AM
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. :blink::laugh:

Sangye
06-28-2011, 03:29 AM
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
06-28-2011, 03:32 AM
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
06-28-2011, 04:46 AM
LOL The nuance was lost on me.

pberggren1
06-28-2011, 10:01 AM
LOL The nuance was lost on me.

Poor nuance.

drz
06-28-2011, 11:55 AM
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.