Methotrexate vs. Imuran

[Happy Camper]

So I just got home from seeing Dr. Langford at the Cleveland Clinic. I had my first CT scan since being treated. Dr. Langford said it was better then she could have even hoped for. YAY!!! The nodules are half the size and decrease in inflammation etc.... I'm also down to 45mg of Prednisone and can keep going down by 5mg a week until I reach 20mg. Still feeling good on the Cytoxan and Pred. with minimal side effects.

So I have to go back and see her in October and at that point hopefully stop Cytoxan and switch to my maintance drug. She is giving me the option of taking either Methotrexate or Imuran. She said to look into both of them and let me know what I decide. Anyone have experience with these drugs or some guidance?????

She also told me that it's probably in my best interest to look into a new job (I'm a nurse on a very busy/highly infectious floor). She worries about me catching an infection and then that causing a relapse. Has anyone noticed after that got sick with an infection thats when they would relapse or flare up.

Thanks for all your help!

[Jack]

Glad to hear that your treatment is going well and delivering the right results. I got on well with Imuran - no side effects and it kept things in check until I could make a further change on to Cellcept.

[elephant]

Happy Camper, glad you went to the Cleveland Clinic and sounds like your doing well. I was on imuran, it did not work for me ( drug reaction) everyone is different. I am on cellcept. My question is why she didn't suggest cellcept?

[Jack]

I think Cytoxan > Imuran > Cellcept is the usual progression.

[JanW]

My rheumy personally is reluctant to use cellcept as he says that research has shown that it doesn't work any better than imuran but is pushed much harder by its manufacturer as the next new thing. It's also a much more expensive drug. Peter Merkel, the noted vasculitis doc out of Boston termed Cellcept a "Cadillac that drives like a Ford" (I'm pretty sure Langford was at this session by the way), and said that he doesn't recommend it to his patients generally (I know that both elephant and Jack have transplants, and cellcept is an anti-rejection med, so they may have used it for that reason anyway). Merkel's big thing also was that about 10 percent of users have intractible diarrhea. I think that its use in vasculitis might have initially stemmed from looking for a non-chemotherapeutic alternative to stepping down from ctx or rtx in severe case, or initiating treatment in mild cases. As for me, I started on 15 mg of mtx, and am increasing that to 17.5 mg this week, hopefully to take care of some inflammation still happening in my ankle. My blood work is now normal (started on mtx/no pred in late March). I have had no side effects. The drag (for me) with mtx is that you are strongly advised to severely limit alcohol (2 to 3 drinks per month), which I understand is not the case with imuran. Also with mtx you have to be closely monitored for liver toxicity, and to the extent that you use stuff like advil/tylenol on a regular basis you need to talk about that with your doc. I'm sure that my rheumy, who carries a large patient load of RA patients, simply prescribes mtx more often as a first line treatment, and did so with me (and it worked).

It also seemed to me that mtx was getting more discussion time generally at the conference, so maybe more docs are going this route in vasculitis now? Most talked about drugs were rtx, ctx, mtx and imuran in that order. Not much discussion about cellcept at all.

[Jack]

That is all interesting stuff Jan. In my case, my Nephrologist was very keen on Cellcept when I started on it (as you say, it is a drug associated with transplant), but he was talking about making a change just before he retired. I was not keen on doing this because of the good results I had been getting so never took him up on it. What you say about Imuran sounds about right as it kept me in remission without side effects and I was never warned about serious consequences of using it for an extended period of time.

[pberggren1]

My doc said on Thursday that most Rheumys go with mtx because it is so widely used to treat RA. He gave some other reasons as well but can't remember them right now. He didn't seem to be down on Cellcept though. He did again stress that ctx is still the better drug to use over rtx because of its efficacy and proveness over a long period of time and that the studies on rtx are too small and don't prove anything just yet.

[Jack]

Cyclophosphamide (ctx, cytoxan) is indeed very effective, but the risk of developing bladder cancer with long term use is very high and does not reduce when you stop taking it.

[Happy Camper]

Wow thanks for all the info! Its kinda hard to find alot of information on the internet about Wegener's. I did do some research and it seems that of all the clinic studies they have been doing they are not finding a difference between imuran vs. mtx, as far as toxcity vs. relapse. When I asked Dr. Langford which she thinks I should start with she said she doesn't have a prefernce.
Elephant I will ask about cellcept when I she her, I'm curious myself. My dad takes cellcept for his liver transplant and does well on it.
I do like to go out about once every month or two and have a few drinks so I was thinking about trying the imuran to start with. At first when I was diagnosed they told me I couldn't even take mtx b/c of how bad my lung involvement was, but she said she thinks I can now b/c they have already improved so much. So that makes me again want to maybe stear clear of the mtx.
Her plan is to keep me on the maintance drug for 2 yrs she said and if I'm still doing well try and take me off drugs all together. I hope so, but well have to just what and see.

[Jack]

Her plan is to keep me on the maintance drug for 2 yrs she said and if I'm still doing well try and take me off drugs all together. I hope so, but well have to just what and see.
From what has been said recently, that seems to be well worth a try. Getting free from the Pred after all that time might be quite a struggle though.

[Happy Camper]

I know I'm starting to feel the effects already from the decrease in prednisone. My voice is back to being weaker/hoarse at night. I also don't have the relief from my knee pain ( which is seperate from my wegeners stuff). My lungs also feel a little stiffer at night, but I'm hoping that will improve with time and is more related to the surgery (open lung biopsy). I guess time will tell, I just keep trying to remain positive. I also have been very strictly sticking to my anti-inflammotory diet and hope that is helping with getting me into a remission.

[elephant]

Happy Camper that is great regarding the two years. How long has your dad been on cellcept for his liver transplant?

[Happy Camper]

He had his transplant 13yrs ago and has been on cellcept and also prograff since then. He is probably in better shape then most people 20 yrs younger then him LOL! He mountaints climbs etc... out west all the time.

[JanW]

My understanding from the conference is that they would try to get rid of the pred from the 'average' patient, way, way, before even reducing the immunosuppressant. They were throwing around the idea of being on pred for six months or less -- just shortly longer than it might ideally take to induce remission. The idea being that once you were off the 'big gun' of rtx or ctx, you would also be off pred.

Phil, all pure WG studies are going to be, by the very nature of the disease, very small. So, to some extent when rheumys say 'that's only the result of a small study...' there's no other kind of study that is really going to happen, when you compare it to RA or lupus, which could research thousands of people at a time. What Jack says is true, while we do not know what the future holds for rtx, we do know the risks of ctx, which may make it worth it for many people to try to newer drug.

[Happy Camper]

Jan
I bet Dr. Langford was at the conference. All the things you said is pretty much the plan for me. Hope to be off pred. by 6months. She said she thinks the way my ctscan looks that I should be in remission at the time I switch from ctx to imuran or mtx. I hope so.

[JanW]

Yes, she was there...I saw her speak a couple of times. If I had to guess, in a decade the idea that many people are on pred for multiple years for this disease will become as rare as hearing of people now who are on cytoxin for years.

[elephant]

Thank you so much for the information Happy Camper and JanW.
Camper, how much cellcept ( mg) does he take?

[Sean48]

That is good news.......I go for my first one on the 30th so hope mine will be as good as yours. It sounds like we were pretty much the same when we started. Keep up the good work.

[Sean48]

I used metho for my RA but went from pills to injection. It worked fine with me but like you said Jan you need to watch the liver.....I was not a good girl and drank more often than I should.
My liver was always good.....My other drinking friends used my liver tests to know they could continue. bad bad.
Anyway..... I will probably go back on it.
My bad drinking days are over.....Time for my new life....My new normal life that is.

[Sean48]

Jack....Do you know the percentage of risk for the bladder cancer. Is it high? What is long term use for cytoxan?
I hear that alot.

[pberggren1]

My understanding from the conference is that they would try to get rid of the pred from the 'average' patient, way, way, before even reducing the immunosuppressant. They were throwing around the idea of being on pred for six months or less -- just shortly longer than it might ideally take to induce remission. The idea being that once you were off the 'big gun' of rtx or ctx, you would also be off pred.

Phil, all pure WG studies are going to be, by the very nature of the disease, very small. So, to some extent when rheumys say 'that's only the result of a small study...' there's no other kind of study that is really going to happen, when you compare it to RA or lupus, which could research thousands of people at a time. What Jack says is true, while we do not know what the future holds for rtx, we do know the risks of ctx, which may make it worth it for many people to try to newer drug.

Yes Jan, I tend to agree with you about the ctx vs. rtx. I want my doc to do some more investigating for himself about this. Do you know where I can find the studies done on rtx? I want to learn more about these studies so I can be more prepared the next time I see my doc. So far that is the only area that I disagree with him.

[Jack]

Jack....Do you know the percentage of risk for the bladder cancer. Is it high? What is long term use for cytoxan?
I hear that alot.
About 15% with Wegs patients I believe, or to look on the brighter side - 85% don't get it. ;)

Scary isn't it? But for many of us there has been no option because the risk from unchecked Wegs is far greater.

[Sangye]

All chemotherapy drugs are carcinogens. My first docs (non-Wegs specialists) told me ctx increases your lifelong chance of getting bladder cancer by 33%. It also significantly increases the chances of getting other cancer due to having been immune-suppressed and also because it damages DNA. I don't know if the 33% is accurate.

Phil, Jack is right about the study sizes for rtx. The RAVE study was large--a multicenter trial. These studies are the largest we're going to get. I think your doc is referring to the lack of longitudinal studies-- long-term evaluation of a drug, as in decades.

I was on mtx for about 2-3 months after ctx. I immediately developed pulmonary infiltrates (pneumonitis/ allergic reaction) and had to stop it. I can't take it again. This is a fairly common risk with mtx and there's no way to tell ahead of time if it will happen.

I wonder about Cellcept's record, too. I was on it for 2 years and the Wegs was never under control. However, I know there are 2 things to blame for that: 1) I was not in remission to begin with (ie induction phase hadn't worked) and 2) I was taking too low a dose to control Wegs activity. When I started at JHU in 2008 I was already on it. Dr Seo thought I was doing okay (we now know I wasn't) and didn't want to mess with a good thing. He said he had moral objections to Cellcept because of the price. I had never heard an MD say something like that before. Earned him a lot of my respect that first day!

[Sangye]

Happy Camper, I'm glad to hear how well you're doing. Remember that 45 mg pred is still a very high dose and is masking a lot of symptoms. It's natural to feel a bit worse as you decrease it. The lungs in particular really like pred! As you decrease it, you might notice more tightness and difficulty breathing. Not like when the Wegs was highly active, but not your old lungs. Dr Seo said it also makes the lungs more sensitive to air pollution, etc....

[Happy Camper]

From what I read the risk of bladder cancer is 6% (when you take it for like 3-6 months) Dr. Langford said that if I take it for only 3 months and drink the water the way I should be my percentage could be even less. I have been drinking between 2.5 to 3L of fluids every day religiously. It sucks but not as bad as I thought it would. The hardest part is when I'm out with my 3 kids and I have to pee all the time. Like in the park etc.... LOL, it gets interesting.
I think I read somewhere that once you have been on Cytoxan that you have a 16% risk of cancer over a 15yr. period. So maybe the risk goes up even when your off it over time. I'm only 29 so I guess I might be screwed. I asked Dr. Langford if I could live 50 more years. She kinda laughed and said yes.

[Happy Camper]

My Dad is takes 750mg of Cellcept twice a day for the last 13yrs. and I think 1mg of prograff.

[elephant]

Thanks Happy Camper. He is off prednisone too? When I go my kidney from my brother that was 1989, they started me on high dose of prednisone and cyclosporine. They wanted me on prednisone for life, but I did my research and talked to my docs about getting me off. I was off prednisone for ten years before I was diagnosed. I am hoping to get off prednisone very soon. :)

[Lightwarrior]

If you work on the floor with direct patient care you might want to find something that allows you to remove yourself from direct care. I am not allowed to be on the unit at all if my white count is below 3.5. I am confined to my office, which gets quite old but at least I am still working. When my white count is high enough to be on the unit i use extreme handwashing and i stay ot of rooms with know infections.

[elephant]

After my kidney transplant, I too was suppose to stay away from infectious patients because of them meds that I was on. I did direct patient care, but I didn't take care of patients with MRSA,pheumonia...ect. Then after five years I became a Case Manager and Utilization Review nurse. That might be a better job for you HappyCamper.

[elephant]

Happycamper, even the infectious disease doctor at the local hospital here did not want me working...afraid of liability. So I had a physician fight for me to work at my local hospital and then just after working one month I developed the lung nodule...and went down hill. So I am not working as a RN, I might in a couple of years...who knows.

[Lightwarrior]

Eleplant: Yes he has been off pred for 8yrs. now and doing really well with that. I hope you can get off soon too.

The floor I work on is so "gross". Almost every pt. has pneumonia, MRSA, VRE, C-Diff hepatitis or something. I just worry about catching something and then causing me to relapse. I don't know what I'll do. I had such a sweet deal where I was. I worked one 3-11 shift a week and made good money doing that. My husband watched the kids so we didn't even need a sitter. ALot of office jobs etc.. are day time which will not work for me with the kids. I think I might take a year or so two off, well see.

If I had the option of taking a year or two off I would do it in a heart beat, as much as love my work.

[elephant]

I know lightwarrior. I wish you could take time off, but I understand your circumstances. I feel bad for the people on this forum who have to work and are struggling to take care of themselves at the same time.

[Sangye]

Happy Camper, I can't imagine a worse job for a Weggie than working on an infectious disease unit! That's the last thing you need.

[Happy Camper]

Sangye: I know right LOL how did that happen. I think between trying to take care of 3 kids and fighting Wegener's it's best to take some time off. I'm very grateful that my husband works and I'm able to take time if need be. Maybe when my kids are all in school I can focus on nursing again. I hope so, I'm struggling with not being a nurse right now. Like a little bit of an identity crisis. I guess Wegener's does that to you. But I'm sure I'll get through it. And to be honest I have been looking for a change for a long time. My floor at work is so heavy and stressful and I have just been there too long (8yrs) time for a change.

Elephant: That would be my worst fear, that I went back to work and caught something and relapsed. I'm worried enough when winter hits and my kids bring every common thing home. I def. don't need the stress of catching all those terrible hosp. infections

[elephant]

HappyCamper, I know how you feel...I go back and forth on the "identity crisis" and then realize I just can't do it ....need to take care of myself and two kids. Thank goodness my husband works too.

[pberggren1]

I don't see why the price of drug would factor into using it or not. I mean if one drug is 1000 and the other is 100 but the 1000 is going to work better with less side effects, who cares about the price.

[Jack]

Happy Camper - could you get a transfer to a different ward, something like Orthopedics perhaps?

[Happy Camper]

Jack: I could get transfered to something else, like ortho or labor and delivery. THe problem is I need to do a full time orientation for about 2-4 months depending on which floor I choose. Part of the orientation would have to be on days and I have no one to watch the kids :( Wegener's could not have come at a worse time. LOL!!! I'm like come on why not in 3 years when my kids where all in school, then I could rest more, etc... Oh well thats life right. I guess it's better now for them b/c they don't even know I'm sick or anything. They think I feel on a rock and got a really big boo-boo (the surgery from open lung biopsy)

[csgaippe]

HI Happy Camper! Wish I had known you had an appt at the Clinic; we could have done lunch! I work about a mile away.
I have been on MTX since March but it is not working for me. About a month ago, my doc said my disease was not well-controlled so she upped my Pred to 15mg ( I was down to 10mg.) and my MTX injections to 1.0. I spoke to her again this morning and she is changing my treatement. I am having labs done on Wednesday and she and I will talk next Monday to decide which treatment we will try next. Sorry to be a downer, but I too felt great until my Pred dropped to about 20mg. On 60 mg of Pred I could breath clearly for the first time in years!!!
I am learning that this disease really is a marathon and course changes are almost to be expected.
Cathie

[LisaMarie]

Sangye: I know right LOL how did that happen. I think between trying to take care of 3 kids and fighting Wegener's it's best to take some time off. I'm very grateful that my husband works and I'm able to take time if need be. Maybe when my kids are all in school I can focus on nursing again. I hope so, I'm struggling with not being a nurse right now. Like a little bit of an identity crisis. I guess Wegener's does that to you. But I'm sure I'll get through it. And to be honest I have been looking for a change for a long time. My floor at work is so heavy and stressful and I have just been there too long (8yrs) time for a change.





:biggrin1:
Happy Camper
I was lucky and transfered to a quality review job and do core measures amoungest other things...I am also an Rn and working the floor is not an option...i can not even get clearence to take the physical part of the ACLS since it may aggrevate my love trach....see if you have something like that where you work.....I wear a n95 mask when I go to the floor since I am currently on Rituxan infusions....i try to do most of my audits from my office away from everyone......It was a tremendous cut in pay but I can still work....also there are companies that have home infusion nurses...you can go to someone's house ...infusing IVIG over a few hours and visit ...they pay is pretty good and it is flexable enough that you work on your good days...I am grateful to be able to work....not always feeling up to it but grateful....Times are tough and we still require 2 incomes....Let me know where you are located and maybe I can do some networking for you...have a great day
Elephant: That would be my worst fear, that I went back to work and caught something and relapsed. I'm worried enough when winter hits and my kids bring every common thing home. I def. don't need the stress of catching all those terrible hosp. infections
read above not sure what happen

[elephant]

Cathie do you go to the Cleveland Clinic? Sorry the mexthotrexate is not working for you! :(

[csgaippe]

HI Elephant! Yes, I see Dr. Villa-Forte for my Wegs and Dr. Woodard is my ENT. I am very fortunate to be so close. Being from Cleveland does have an up side after all! :-)

[elephant]

You like Dr Woodard? I might have to go to him, when I go see Dr langford. Did Dr Villa-Forte recommend Dr Woodard?

[Psyborg]

HI Elephant! Yes, I see Dr. Villa-Forte for my Wegs and Dr. Woodard is my ENT. I am very fortunate to be so close. Being from Cleveland does have an up side after all! :-)

I see Dr Villa-Forte as well, but Dr Knott is my ENT.

[csgaippe]

You like Dr Woodard? I might have to go to him, when I go see Dr langford. Did Dr Villa-Forte recommend Dr Woodard?

I have only seen Dr. Woodard once but I really liked him. I saw Dr. Henry first, but she sent me to Woodard in hopes that maybe some day they can repair my septum.

[Happy Camper]

Elephant: What suburb did you live in?

[Happy Camper]

It takes about 5 1/2 hours to get there. Not too bad. Not happy about making the trip every 3 months but what you going to do!

[Jack]

Perhaps sending PMs would be a better way to continue the discussion? The thread is wandering off on a life of its own. ;)

[Jack]

Don't throw shoes at me! :scared:

[Mr Spectaculous]

I had an allergic reaction to Methotrexate. Being controled now for about 2 years with cellcept. I'm also off prednisone after being on it for 2.5 years.

[Jack]

Congratulations on getting off the Pred. A lot of us will be very jealous! :smile1:

[elephant]

How much cellcept do you take? Do you take bactrim DS?