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wgrebel
05-31-2010, 12:59 AM
My Wegener's Specialist concluded on April 5, 2010 that I was in remission. My rheumatologist has also made the same conclusion. My rheumatologist wants to look at taking me off cytoxan and putting me on imuran. I have some questions about Imuran.

1) Those of you on Imuran out there, Did you start out on Cytoxan and then take Imuran or did you just take Imuran?
2) How does Imuran effect you (what are the dangers)?
3) Does it work as well as Cytoxan or is it better?
4) Is it easier on your immune system than Cytoxan?
5) Does it hurt your stomach?

Its been a while since I have been on here. I've been doing very, very good since my last hospital stay and since I found out I was in remission. I have had one setback, I was diagnosed with a case of Shingles, which I am going to post on another part of the forum. Thanks for any information anyone can provide.
WG Rebel

elephant
05-31-2010, 01:10 AM
Hi WGrebel! I was on Imuran, did not take cytoxan because of issues with kidney transplant and my other immunosuppresant drug cyclosporine. I was on cytoxan for two or three weeks can't remember about 14 months ago and had a reaction ( drug). They first week I was on Imuran I felt like crap, second week worse! Third week in the hospital, passed out.....the hospital pharmacist was on my case and she thought it was a drug reaction....anyways you might do well on it. Cytoxan is more toxic!

Jack
05-31-2010, 01:12 AM
Yes, the normal regime is to switch from cytoxan to imuran and then on to something like cellcept. I been down this route several times until I reached full and long lasting remission which for me was achieved with Myfortic.

You need to get off cytoxan as soon as you can because it has serious long term side effects and the amount you can safely take during your lifetime is limited. Best to keep your dose as low as possible so that you can use it again in future should you ever need it. Imuran is also a highly toxic drug and its effects will need monitoring, but it is not so severe as cytoxan. I had no side effects from its use, but this is a very individual thing so you will have to wait to see what happens.

Good luck! Sounds like you are making progress. :)

wgrebel
05-31-2010, 01:44 AM
Thanks, to both of you for your quick replies. I agree with you Jack about the Cytoxan. It scares me to take a toxic drug that can cause cancer and God knows what else. I am ready for the switch and the rheumy is ready. I see my specialist June 7, 2010 and my rheumy wants to confer with him before any changes are made. Tell me more about this Cellcept. What is it?

elephant
05-31-2010, 03:26 AM
I am on Cellcept 2000 mg a day, it is a immunosuppressant used for autoimmune diseases and transplants. Some of us on the forum are taking it and or took it. I like Cellcept, no problems yet!

Jack
05-31-2010, 04:13 AM
Cellcept and Myfortic are the same drug in slightly different forms. The Myfortic is coated for slow release and is supposed to give less side effects. It worked for me, but you need to be in a fairly established state of remission on Imuran (sometimes called azathioprine) before you switch or you risk going back to stage one. It seems to be quite a benign drug and has given me no problems.

Doug
05-31-2010, 02:32 PM
CellCept went down and stayed down, unlike Cytoxan, which was a fight till my doctor precscibed me something to give my poor stomach a chance!

Sangye
06-01-2010, 12:44 AM
I never took imuran, but I was on Cellcept for 2 years. Easy drug-- I hardly noticed anything while taking it.

Lola
06-01-2010, 01:58 PM
I have taken Imuran since October 23, 2009.

I don't like it much. I started at 150mg/day, but had difficulty tolerating it. At that dose it caused my upper abdomen to be hard, bloated and tender. I had a lot of violent reflux, even taking Protonix daily.

Prior to Imuran I had been on methotrexate and Cellcept, but both of them were ineffective for me at that time.
The Imuran didn't stop the flare, either, so I got Rituxan for my refractory Wegs.

Now, the Imuran has been lowered to 50mg daily. I am tolerating it much, much easier at that dose. As I recall, 100mg daily didn't cause me nearly as many problems as the 150 did.

But please remember that our reactions are all different.

Jack
06-01-2010, 06:30 PM
With all these medications, you must use something like Lansoprazole to protect your stomach. Over the counter drugs will not do it.

elephant
06-01-2010, 08:43 PM
Lola, how many dose's did you get of Rituxan (infusions)?

Lola
06-02-2010, 02:29 AM
I've had one round of 2 infusions.

DEE
07-15-2010, 07:48 AM
hi saw wg consult today thinks he thinks that im more stable now and that there is a possiblity that he could change me onto Imuran soon depending on some test results and some investigations to be completed eg x ray results bloods etc done today
i need to see rheumy also for an up todate assessment but still good news as i so want to move on from ctx and with preds tasppering its something to move on withn DEE x
welcome any sadvice on changing from cxt to Imuran

elephant
07-15-2010, 08:14 AM
Dee, that was a drug that they wanted me on .....but it did not work for me. Everyone's body is different...it might just work perfect for you!

DEE
07-15-2010, 08:21 AM
thanks elephant nothing solid yet but hoping what did you mean by not working for you did wg flare up again DEEx
ps tried to send p message but your box full :) DEE x

elephant
07-15-2010, 08:29 AM
Thanks Dee, I emptied my box. Hope that works. I had a drug reaction to Imuran. You probably will be fine.

DEE
07-15-2010, 08:37 AM
Thanks Dee, I emptied my box. Hope that works. I had a drug reaction to Imuran. You probably will be fine.

thanks elephant got to go to bed now brain on overdrive with information overload take care of you DEEx

Sangye
07-15-2010, 09:20 AM
I hope it goes well for you, Dee. Imuran is a mixed bag. Some people can't tolerate it at all and others are perfectly content on it for years. Definitely better than ctx!

drz
07-15-2010, 01:53 PM
With all these medications, you must use something like Lansoprazole to protect your stomach. Over the counter drugs will not do it.

Thanks for posting this. I was on Protonix for GERD even before Wegener's disease. They found damage in my throat from acid reflux but i didn't know it might be caused by Cytoxan. I am now on Pantoprazole which seems like a generic but it doesn't feel like it is working as well as I would like so I want them to review the meds and dosage.

Sangye
07-15-2010, 11:51 PM
Drz, don't wait long to ask your docs. You can do sizeable damage to your GI tract (and even vocal chords) meanwhile.

Pantoprazole is generic Protonix. The usual dose is 40mg, so you might check that first.