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drz
11-07-2010, 06:36 AM
My rheumatologist says it is time to start decreasing my Cytoxan.

I haven't read much about how people come off Cytoxan? It is a problematic as tapering off prednisone?

DEE
11-07-2010, 07:10 AM
i did not tapper as i was taking cxt tablet form daily just stopped taking and started taking Imuran the next
but everyone is different should be done only to your needs good kuck

Jack
11-07-2010, 07:12 AM
I don't remember ever tapering ctx, but it was some time ago. I think I just made a straight switch to Azathioprine.

DEE
11-07-2010, 07:25 AM
i did not tapper as i was taking cxt tablet form daily just stopped taking and started taking Imuran the next
but everyone is different should be done only to your needs good kuck

Think i had better stop posting tonight spelling getting worse even with nose to screen meant GOOD LUCK

Barbara1966
11-07-2010, 09:07 AM
I was on cytoxen for year and I did not tapper, we just stopped and switched to methotrexate. I am on methotrexate for last 4 months and doing great. Good luck.

julia
11-07-2010, 09:10 AM
Did not taper. Just went on to Imuran.

Sangye
11-07-2010, 10:32 AM
No taper, either. I've never heard of tapering ctx. It doesn't really make sense, as it's not therapeutic below a certain dose.

flana
11-07-2010, 02:50 PM
Odd! I wonder why my rheumi is tapering CTX while upping my Imuran. Shall ask him...

elephant
11-08-2010, 01:10 AM
Is your Rheumy a Wegeners specialist Flana? Ask him definitely! I am just guessing but maybe he thinking is that your on low dose of imuran and he doesn't want you to flare, so he is tapering you off the cytoxan slowly.

pberggren1
11-08-2010, 02:09 AM
The second time I went on Cellcept I tapered ctx and increased the Cellcept.

flana
11-08-2010, 03:53 AM
Here's a reply from my secondary Rheumy at Stanfords. Typically cytoxan is used at 2 mg/kg orally for 3 months. Then for 3-6 months, the dose is lowered to 1.5mg/kg and imuran is added; then imuran is continued for 3 more months at 1.5-2mg/kg before then tapering over 6-12 months. The final taper regimen is highly variable and is really an art.

I believe this is the European regimen that he quotes. He always talks about it when he sees me.

drz
11-08-2010, 11:48 AM
Here's a reply from my secondary Rheumy at Stanfords. Typically cytoxan is used at 2 mg/kg orally for 3 months. Then for 3-6 months, the dose is lowered to 1.5mg/kg and imuran is added; then imuran is continued for 3 more months at 1.5-2mg/kg before then tapering over 6-12 months. The final taper regimen is highly variable and is really an art.

I believe this is the European regimen that he quotes. He always talks about it when he sees me.

Thanks for posting this. It gives a reasonable basis on what to expect.

JanW
11-08-2010, 11:51 AM
I also think that European standards seem to vary from American and Canadian ones; at least that's what I was hearing at the conference. It's true, as Sangye says it doesn't really make logical sense -- the ctx is not working below a certain dose anyway.

Brooke
11-13-2010, 03:26 AM
I think there was discussion on this previously, but is there a difference between Cytoxan Infusions VS pill form? Is one more toxic than the other? Is one used for a longer period of time?

drz
11-13-2010, 05:28 AM
I think there was discussion on this previously, but is there a difference between Cytoxan Infusions VS pill form? Is one more toxic than the other? Is one used for a longer period of time?

I was put on pill form because of concern about reactions or side effects from IV form. They said it was easier to monitor side effects and adjust than IV form. It seemed logical because the IV form will contain a lot more of the drug since you don't take it every day like pill form.

Sangye
11-13-2010, 08:47 AM
Oral ctx is more effective than IV. The point that drz raises about the ability to change the dose is huge. Last year I had to stop ctx because it was stressing my bone marrow. If we'd used the IV form, it could have been a real mess.

Brooke
11-13-2010, 09:21 AM
Yikes, sounds like the pill form would be easier to take since they can adjust dosing better. Are the side effects still the same? Possible bladder cancer? Is this only if used for a long period of time or would using it for a short period of time be "ok."

Sangye
11-13-2010, 09:51 AM
Same side effects and risk of cancer. It's chemo. The shorter the duration of use, the better, but the risks are still there.

Brooke
11-14-2010, 03:54 AM
Thank you.

drz
12-13-2010, 03:05 AM
After Cytoxan there seem to be several options. What are the advantages or disadvantages of the various drugs and how does the rheumatologist decide which one to use for you? I will be switching to something else in the next month or two.

Jack
12-13-2010, 03:11 AM
The latest information mentioned on these pages was suggesting that Imuran is the best option.

JanW
12-13-2010, 03:25 AM
Imuran or methotrexate are the most popular choices; if you look at the thread I started about new research on immunosuppression, you can see that concerns are being raised about cellcept. Essentially it doesn't appear to be as effective at maintaining remission as imuran, and, in fact, people on cellcept seem to flare more seriously. There are plenty of people on mtx, though...I don't know if this is gaining in popularity...it's the drug I started out on and it got me (and is keeping me so far) in remission. Haven't had to go the ctx or rtx route so far.

Sangye
12-13-2010, 09:44 AM
Both imuran and mtx are harder on the liver than cellcept. Those with liver issues with might not be able to tolerate them. Also, both imuran and mtx are chemo drugs and cellcept isn't. If someone has a history of having taken chemo in the past (eg cancer treatment), it may be unwise to use more chemo drugs. The doses are much lower but it is given every day, sometimes for years at a time. So depending on a patient's history, cellcept might be the best option.

There is a blood test they have to do to make sure you can use imuran. It looks for an enzyme called TPMT that allows the body to metabolize imuran. Some people have a genetic mutation and don't make the enzyme, so the imuran would accumulate and damage the liver. (Even if someone's TPMT test is fine they can still have a terrible reaction to imuran, like Elephant did.) So some people can't even try imuran, if they don't make TPMT.

pberggren1
12-13-2010, 11:23 AM
I remember having the TPMT test done. They don't do it here in Canada so we had to send it to the Mayo Clinic in Rochester. I had lots of it and was able to take Imuran.

elephant
12-13-2010, 01:18 PM
I wish I could take the Imuran but the hospital pharmacist really thought I has a allergic reaction to it...many theories but to be on the safe side I wanted to be switched. My local Rhuemy was not convinced but I had to go on what the pharmacist thought. Many docs involved in my case when I was hospitalized....they had to rule out many things before they came up with this diagnosis of allergic reaction.

Daggar
05-28-2011, 02:31 AM
Sorry for raising this again....

It appears that there are different practices when switching from ctx to aza or mtx? Is there any benefit to doing the "tapering" that is mentioned in this thread?

if it is a straight switch how do they determine the dosage -- ie Holly is currently on 75mg of ctx, would they make it 75mg of aza? Her Neph mentioned 50mg of aza and bump it up if necessary -- does that sound like the right thing to do?

Jules
05-28-2011, 05:22 AM
Hey Daggar, Holly and I seem to be on a similar time scale - made the switch from ctx to aza this week. I went from 50mg ctx to 100mg aza. . . without any side effects so far. . .fingers crossed it carries on that way!! :biggrin1: Now they are hell bent on getting me down to 5mg of pred within a month. Keeping everything crossed Holly's (and everyone elses) switch goes as smoothly!

Daggar
05-28-2011, 05:44 AM
Hello Jules, sound like you're doing well.:thumbsup: We have are fingers, arms, legs, eyes and whatever other body part that can be crossed for you -- may be difficult to keep that up for any extended time without being labelled a pretzel but hope your progress continues!

I was wondering about the lower dose of aza-50mg from the current ctx-75mg that Holly's docs were looking at. I just got an email from one and their concern is a possible liver issue with the switch and considering all WG markers are dormant and have been for quite some time they feel that the lower dose would be wiser for now. I'm not sure if that makes sense? They will be giving her one more iv of methylpred and holding her oral dose at 10mg while she makes the switch.

drz
05-28-2011, 06:27 AM
Hello Jules, sound like you're doing well.:thumbsup: We have are fingers, arms, legs, eyes and whatever other body part that can be crossed for you -- may be difficult to keep that up for any extended time without being labelled a pretzel but hope your progress continues!

I was wondering about the lower dose of aza-50mg from the current ctx-75mg that Holly's docs were looking at. I just got an email from one and their concern is a possible liver issue with the switch and considering all WG markers are dormant and have been for quite some time they feel that the lower dose would be wiser for now. I'm not sure if that makes sense? They will be giving her one more iv of methylpred and holding her oral dose at 10mg while she makes the switch.

They switched me and started me at the same low dosages mentioned cause they didn't have the results back on the enzyme test but didn't want to leave me without any protection while waiting. My WBC was low from the CTX and wasn't holding the inflammation markers down anymore. My rheumy said that at the low dosage liver problems would be minor if they showed up.

Daggar
05-28-2011, 06:37 AM
drz - How long have you been doing the low dose Imuran and has it kept the WG in-check?

drz
05-28-2011, 07:07 AM
drz - How long have you been doing the low dose Imuran and has it kept the WG in-check?

I only did that till test results on enzyme came back and they said it was OK to increase it. I went up slowly to 150 and stayed there awhile. They increased it to 200 when i had a flare in March and that is my current dosage. However, my liver enzymes have tripled so they may need to change something again if tests next week are too high. I did cut back on pravastatin to lower cholesterol since that also loads on the liver and the azathioprine is considered more important right now for my over all health.

pberggren1
05-28-2011, 09:04 AM
I make the switch next week from 75mg of ctx to 150mg of Aza. I have been on the ctx for 3 months now. All my blood work has been looking good for the past 4 or 5 weeks. My doc says it is better to start out at higher dose of Aza than a lower one because it usually results in a better remission in the end. He based the dose on 2mg per kg of body weight.

Jules
05-29-2011, 05:48 AM
Daggar, I now have a vision of a room full of Weggies doing yoga, assuming the 'Pretzel' position!!! I think you've found a niche in the market!

Phil, my Rhumy advised me that 2mg per kg was how the calculation is made too . . . in my case he is either lousy at maths (but I won't hold it against him as 100mg works in my favour!!) or he is taking the gentle approach with a view to upping it if necessary.

NicShaf
06-16-2011, 08:26 AM
No taper, either. I've never heard of tapering ctx. It doesn't really make sense, as it's not therapeutic below a certain dose.

Does anyone know what level the Ctx stops being therapeutic? My Rheumy switched me from 150mg Ctx to 100mg Ctx daily last week. I'm just a little worried about it since it sounds like it isn't the normal course of treatment? I don't really feel any different, and I go in for blood work this weekend. Hopefully everything is still on the up and up.

pberggren1
06-16-2011, 09:16 AM
Nicole, how long have you been on ctx and that dose of 150mg? Did your doc say why to drop to 100mg?

NicShaf
06-16-2011, 10:09 AM
I've been at 150mg for 6 months. My lungs have healed, and all my Wegs symptoms have pretty much gone, so he told me I could reduce my Ctx to 100mg until I see him again in 4 weeks at which time we will start looking at maintainence meds...I think we're going with Mxt.
My fear is that if I did all this work for 6months,and I drop my Ctx it willl stop treating me the way it has been and I'll have a flare.

Psyborg
06-16-2011, 10:17 AM
You should be fine. I was on CTX for 3-4 months and dropped immediately to MTX which is considerably milder stuff. You will feel signficantly better as well. I'm no Dr of course :)

pberggren1
06-16-2011, 10:27 AM
6 months sounds too long to be on ctx. I would be pressing to switch to another like aza or mtx or cellcept right away. How much pred are you on Nicole? My doc only likes to keep patients on ctx for no longer that 3 months. He only goes longer if it is absolutely neccessary. Do you see a Wegs specialist Nicole?

Sangye
06-16-2011, 01:22 PM
Phil, 6 months is the usual length of ctx treatment. Some people can get off of it in 3 months but that's pretty short considering it takes 4 weeks to start working. Longer than 6 months becomes more controversial.

Nicole, I think what your doctor is doing sounds reasonable. The 100mg would not be enough to get highly active Wegs under control (unless you weighed very little and that was the right dose for you). But a subtherapeutic dose of ctx is probably about the same strength as the milder drugs. It sounds like he's testing the water to make sure you will tolerate a switch to a milder drug. In the waiting period of 4 weeks, he could increase the ctx dosage if you started having trouble. That would be faster and more effective than being caught out on a milder drug.

For what it's worth, I was tapered down on ctx while transitioning to mtx.

drz
06-16-2011, 01:29 PM
My dosage was adjusted downward several times due to my low WBC from CTX. It seemed to stopped working for me at around 50 MG and I was then switched to azathioprine and this was gradually increased up to 150 mg and then up to 200 when I flared about three months ago.

NicShaf
06-17-2011, 01:00 AM
Thanks everyone, I feel better about my rheumy's decision now...I just have this urge to second guess things sometimes:)

Phil, I'm on 17.5mg of Pred now, and going to 15 in two weeks. I'll be at 15mg until I see my Rheumy in late July and we discuss my next step.

I was comfortable with the 6 months of Ctx, it seemed pretty standard for sinus and lung involvement, my original Rheumy was talking at least a year, that's why I switched doctors shortly after starting my treatment. I don't see a "specialist" per say, but my Rheumy is very seasoned and knowledgeable in Wegs, he is one of the best in the So Cal area.
Kaiser in So Cal also has this neat thing they call a Wegener's clinic. I see ALL the Rheumatologists in So Cal Kaiser every 6 months or so. They meet with me in the ENT department and all go over my case and check me out, stick their camera up my nose, so on and so forth...it's a little weird at first, but I enjoy hearing all the doctors opinions and having them all discuss my course of treatment while I'm in the room.

Sangye
06-17-2011, 01:18 AM
I think people who get IV ctx might be able to get away with 3 months of ctx more often because they're getting the full dose of ctx right away. When you go on the oral form you taper onto it over the course of 2-3 weeks to make sure you can tolerate it.

But like you said Nicole, it probably mostly depends on the severity of disease.

drz
06-17-2011, 01:56 AM
I think people who get IV ctx might be able to get away with 3 months of ctx more often because they're getting the full dose of ctx right away. When you go on the oral form you taper onto it over the course of 2-3 weeks to make sure you can tolerate it.

But like you said Nicole, it probably mostly depends on the severity of disease.

I agree that severity is big issue as well as response to treatment. I had RTX IV, CTX IV and oral CTX for 9 months before switch to azathioprine, but they described my GPA as an extremely nasty version. They now consider me in a drug induced state of remission.

renidrag
06-17-2011, 05:51 AM
I did not taper CTX just stopped and I remember the day June 30, 2010. Wow! I have been drug free for almost twelve months!!!! Maybe I will celebrate with a parade this Saturday in Boston with Lord Stanley's Cup.
Dale

Sangye
06-17-2011, 05:57 AM
That's awesome, Dale. I hope you do celebrate it! :smile1:

NicShaf
06-17-2011, 06:59 AM
Happy (almost) One Year Anniversary, Dale! :)