Now Imuran ?????

[debhaz22]

Hi all,
Since April I've been on MTX (taken off due to side effects), then on CellCept. My Dr. took me off of the CellCept yesterday due to continuing "stomach issues". Tomorrow I start Imuran. Is this "normal", to not tolerate these drugs and switch from 1 to another?? Also, now I'm very anxious about starting yet another new drug, can anyone offer advice, suggestions, their experiences...for Imuran. I appreciate any help!
Thanks,
Deb H. :sad:

[sbeach78]

Just thru reading it seems pretty normal for people to be switched around on these drugs till they find one that's easiest tolerated. I too will be starting Imuran soon, hope it works out good. My Renal Guy says its good, but I bet he's never taken it...lol

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

[jvilner]

Mtx made me nauseous and had loss of hair. I feel well on imuran. btw-I heard that they are working on a new mtx (trying to make it with less side effects) good luck!!

[drz]

Hi all,
Since April I've been on MTX (taken off due to side effects), then on CellCept. My Dr. took me off of the CellCept yesterday due to continuing "stomach issues". Tomorrow I start Imuran. Is this "normal", to not tolerate these drugs and switch from 1 to another?? Also, now I'm very anxious about starting yet another new drug, can anyone offer advice, suggestions, their experiences...for Imuran. I appreciate any help!
Thanks,
Deb H. :sad:

Did they test you for the enzyme to be sure you can metabolize azathioprine OK? Some people can't so they won't tolerate Imuran.

[lag713]

Methotrexate gave me stomach problems for a few weeks and I had some hair loss. I initially used folic acid to to treat the side effects but switched to leucovorin which solved the hair loss. Not sure if the stomach problems were a matter of slowly taking more over a period of weeks or my body adjusting to it. It helped me to take it after dinner and I would sleep through the worst of the stomach symptoms. I know methotrexate is the best thing for me right now but I'm curious about other options. It's always good to know what's out there.

I hope the imuran treats you well. Keep us updated!

[debhaz22]

Thanks everyone for the replies. :)
Yes, he ran the blood test last month for the gene to see if I can be on Imuran. I guess I can!

[Psyborg]

I've been on Imuran for a couple years now. I also didn't tolerate MTX due to liver issues. Imuran is pretty easy on my system, my only concern has been that I think I am less suppressed on this than I was on MTX, but I seriously don't think that is a remotely scientific observation.

[renidrag]

I took cytoxan and when Doc tried to change to Imuran, I couldn't tolerate it so it was back to Cyclo.
Dale

[debhaz22]

Hi Dale,
what happened when you "couldn't tolerate it"?
Thanks!

[hmcollin]

I started on prednisone and methotrexate and saw some progress but moved to Imuran 175mg daily. I have had no side effects and feel much better than the couple of days after taking the weekly methotrexate. I still haven't reached remission after 10 months so I am going to start Rituxan this month. Some people have intestinal issues on Imuran and you should know pretty quickly whether you will tolerate the meds. or not.

[MikeG-2012]

Hi all,
Since April I've been on MTX (taken off due to side effects), then on CellCept. My Dr. took me off of the CellCept yesterday due to continuing "stomach issues". Tomorrow I start Imuran. Is this "normal", to not tolerate these drugs and switch from 1 to another?? Also, now I'm very anxious about starting yet another new drug, can anyone offer advice, suggestions, their experiences...for Imuran. I appreciate any help!
Thanks,
Deb H. :sad:

I've been on Immuran since the Mychophenolate quit working a year ago. I feel pretty good now, and so far, so good, no more flare-ups. I did just have my two six month boosters of RTX in may though. Immuran was my physician's choice due to the lesser chance of side-effects. Oh, and my dose is 150 a day too.

Hang in there Deb!

[LisaT]

I've been on Imuran since about November 2013... Recently increased to 150 mg because my rheumy thought it might help me get off the prednisone, as I was having trouble trying to decrease pred. Imuran has helped with my subglottic stenosis (which surprised my docs as usually only surgery helps), but my fatigue and pain persist. A nodule or lesion on my lung has disappeared since I started. Labs are good, looking at just labs one would think I'm in remission or at least well on my way, but if still feel unwell much of the time. However, looking back I'm much better than I was before starting the meds so maybe I can continue to improve. I was on methotrexate in the past for RA and hated it. Nauseous all the time, lost tons of hair. I tolerate Imuran better, although lately I've started having bad stomach issues some days. This is all just my experience, I don't know whether it is similar to others or even which things are symptoms of the disease vs. side effects of the drugs. I'm also on bactrim. Good luck! Let us know how you do on it.

[darl-p]

I have been on Imuran for about six years. I currently take 75 mg daily in the am. All my docs think this is the proper drug as there is much more data supporting it. I may have to get off it since I have a problem with gout, unrelated to diet, and the med to deal with the gout is incompatible with imuran. I have had no side effects from the imuran other than the frustration of cutting the small pill in half to obtain the added 25mg to get to 75.

[debhaz22]

Hi Mike,
question for you: when you're on Imuran do you HAVE to have the boosters of RTX?? My Dr. didn't mention this. Yet...
Thanks,
Deb (aka Bulldog :wink1: )

[drz]

Hi Mike,
question for you: when you're on Imuran do you HAVE to have the boosters of RTX?? My Dr. didn't mention this. Yet...
Thanks,
Deb (aka Bulldog :wink1: )

Some do but most don't have to take RTX too unless they have a flare or start to flare.

[debhaz22]

whew, thanks :)

[jakekell]

Deb,

I haven't had the Imuran, but tried RTX infusions, but reacted right away had to stop the infusion. MTX hair loss/infections, but it did help. I don't remember my stomach being an issue, but sores in my mouth so did the Folic acid been awhile. I don't do well with a lot of the drugs just the best I can waiting right to find out what is the next one.
Good luck would like to know how it goes.

Mary

[LisaT]

I've been practically begging for RTX because it seems to help so many people feel better, but my docs want to avoid it unless or until I NEED it.. When I finally asked my rheumy why he doesn't think I need it he spelled it out... Although I feel crummy, my bloodwork is good, my lungs look ok, and I have no major organ involvement or haemorrhaging. I take this to mean the downside/risks of RTX are not worth it 'just' to improve quality of life, and it should only be used when organs are being attacked or the disease seems to be life-threatening? Does this seem accurate? Does anyone know? I feel like it should be an individual decision. I would be willing to take some risk or suffer some side effects in exchange for feeling good or better some more of the time. I'm not being afforded that option. Deb, why are you wanting to avoid RTX? Sorry if this should be obvious... Still learning here...

[annekat]

I have been on Imuran for about six years. I currently take 75 mg daily in the am. All my docs think this is the proper drug as there is much more data supporting it. I may have to get off it since I have a problem with gout, unrelated to diet, and the med to deal with the gout is incompatible with imuran. I have had no side effects from the imuran other than the frustration of cutting the small pill in half to obtain the added 25mg to get to 75. Could you take 50mg. one day and 100mg. the next, which would average out to 75mg. a day? Just wondering because I hate splitting pills, too. I don't do it currently but have sometimes found it difficult in the past, even with a pill splitter.

[MikeG-2012]

Hi Mike,
question for you: when you're on Imuran do you HAVE to have the boosters of RTX?? My Dr. didn't mention this. Yet...
Thanks,
Deb (aka Bulldog :wink1: )

Hey Deb, sorry it tool me so long to look at this again. All summer I had been working four 10 hour days. So, I was going home and crashing nightly and trying to get things fdone around home on Fridays and weekends. Forum posts was a casualty of prioritizations in my life! )-8

I had the first four because I was in a flare-up when the former immune suppressant stopped working. So right after the last RTX in November, I started Immuran. The boosters of RTX were part of the standard protocol at six months after the first four.

So long story short yes, I had to have the RTX, but because of the flare up. The Immuran will hopefully keep the bad blood cells suppressed enough to keep the disease suppressed too. I hope the Immuran does the trick, because the mychophenolate did not!

Is that what you wanted to know?

[MikeG-2012]

I have been on Imuran for about six years. I currently take 75 mg daily in the am. All my docs think this is the proper drug as there is much more data supporting it. I may have to get off it since I have a problem with gout, unrelated to diet, and the med to deal with the gout is incompatible with imuran. I have had no side effects from the imuran other than the frustration of cutting the small pill in half to obtain the added 25mg to get to 75.

My generic version of Immuran (Azasan) comes in 75MG pills...

[mrtmeo]

I've been practically begging for RTX because it seems to help so many people feel better, but my docs want to avoid it unless or until I NEED it.. When I finally asked my rheumy why he doesn't think I need it he spelled it out... Although I feel crummy, my bloodwork is good, my lungs look ok, and I have no major organ involvement or haemorrhaging. I take this to mean the downside/risks of RTX are not worth it 'just' to improve quality of life, and it should only be used when organs are being attacked or the disease seems to be life-threatening? Does this seem accurate? Does anyone know? I feel like it should be an individual decision. I would be willing to take some risk or suffer some side effects in exchange for feeling good or better some more of the time. I'm not being afforded that option. Deb, why are you wanting to avoid RTX? Sorry if this should be obvious... Still learning here...

In the USA, RTX is FDA approved for GPA and MPA.
Not sure their protocols where you are from, however.

[drz]

RTX is now FDA approved for used with GPA which makes it easier to get. Holding off on its use till "you really need it" in not unusual as that is what my treating doctor and my Weg expert I consult at Mayo have both told me. Their thinking is that repeated use may increase chances of an adverse reaction or possibly decrease its efficacy if they have to give it to you later for a serious flare "when you really need it".

[Pierre42]

Recently I've managed to have a minor flare ... apparently as a fairly typical result of surgery to reattach my Achilles Tendon (this is my first flare, freaked me out for the first day-or-three, then I got over it) and my specialist switched me from 10mg MTX weekly to 150mg Imuran daily (and 50mg Pred, now down to 37.5mg).

On the upside we caught it when the only sign was blood numbers just starting to tick upwards, new drugs worked their requisite magic, numbers have hit almost perfectly normal now (2 months on the new regime) so I'm back on the pred taper trail.

Goal is to get back to absolutely zero pred and probably 50-75mg Imuran.

Specialist seems to think Imuran daily is lighter on the system rather than MTX weekly, although (so far at least) I've been one of the lucky ones who has not seen any bad side effects from all these "wonders of modern medicine". (only the really high doses of pred get me, though the tapering has never been an issue)

[annekat]

Pierre, 10mg. MTX seems like a pretty low dose; I flared after a few months on that and it was raised to 15mg. Have had another minor flare since then which was managed with a pred increase; I'm now tapering that and am pretty much over the flare. My doc doesn't want to go over 15mg. MTX, which is still not a high dose.

I realize you are now on Imuran, so the MTX dosage isn't really an issue, but I just wonder if a higher dose of MTX could have prevented the flare. I'm glad you don't have issues with these drugs and have that flexibility. And glad your numbers are back to normal.

[Psyborg]

Interestingly after 3 years on Imuran they are now switching me to CellCept...which so far is a nightmare because it's a specialty drug to my pharmacy coverage. We must be on the opposite plans Deb :)

[mrtmeo]

Recently I've managed to have a minor flare ... apparently as a fairly typical result of surgery to reattach my Achilles Tendon (this is my first flare, freaked me out for the first day-or-three, then I got over it) and my specialist switched me from 10mg MTX weekly to 150mg Imuran daily (and 50mg Pred, now down to 37.5mg).

On the upside we caught it when the only sign was blood numbers just starting to tick upwards, new drugs worked their requisite magic, numbers have hit almost perfectly normal now (2 months on the new regime) so I'm back on the pred taper trail.

Goal is to get back to absolutely zero pred and probably 50-75mg Imuran.

Specialist seems to think Imuran daily is lighter on the system rather than MTX weekly, although (so far at least) I've been one of the lucky ones who has not seen any bad side effects from all these "wonders of modern medicine". (only the really high doses of pred get me, though the tapering has never been an issue)

Hi Pierre,
Had you ever been on quinolone antibiotics?
Many with vasculitis that take quinolones have MRSA colonized and this can cause achilles tendon ruptures.
This happened to my mom, but I used colloidal silver on it and it stopped the rupture.
I had to use iodine to get rid of the colonizing in her nares.

[Pierre42]

my achilles rupture was due to the most obvious of causes, middle-aged man who had been on pred for a couple of years playing squash :ohmy:

Everything was 100% fine until it was 100% not, no prior strain/pain/warning, just an incredibly loud snap.

I told my coworkers "it was like your heart breaking" (the loudest sound in the world, and only you heard it)

[feliciamings]

My rheumatologist started me with RTX when I was diagnosed 2 years ago. According to what he told me and the research data he gave my honey (who has a medical background) it is actually supposed to be one of the easiest on your system. Very low side effects and increased quality of life. It is VERY new and more data is always coming out. Again though, the data that is coming out is supportive of how good it is for vasculitis patients. I would question your doctor. I would ask to see the most recent data. I know each case is individual so there are always factors to be considered and really I am surprised at how many doctors are worried about putting their Wegener's patients on RTX with what I read. I tolerated it perfectly with no side effects. Unfortunately it did not work for me in the 3 rounds we did. We may go back to trying it at a later date and use the Imuran at a lower dose to keep it in remission.

When we were sure the RTX didn't work a 3rd time we switched to Imuran - which was in March. We took a month at 50mg and I did so well on it we jumped to the full 150 which I am still currently at. It took nearly 3 months but my blood work came back this past week and the Imuran is WORKING!!! Everything is better than it has been since I first had symptoms. Plus I have been feeling AWESOME for 3 weeks. Which was a huge switch because just maybe two weeks before that I was feeling worse than I had at any given point. I don't mind taking the Imuran but I do wish the RTX would work for me! I'd much rather go in every 6+ months for a few infusions than take pills every day. Plus, the risk to your kidneys is less. On Imuran I have to have regular blood work to make sure it isn't hurting my kidneys... the same concern is much less on RTX.

If you really would like to try it - be clear with your doctor you want the LATEST information. It is still very new and it surprises me how many rheumatologists are slow to change to the most up to date options. So, sometimes it is up to us to make that happen.

[Dirty Don]

It's not that rtx is any more dangerous to us than any of the others, it is the most powerful tool we have at this time against WG. It is the most effective one, but it is also the last step in treatment at this time. Why use it if not necessary. I do believe in knocking down the disease quickly because of the side damages it can do, but I don't think you need a sledge hammer all the time when a nice nail hammer will do...

[annekat]

It's not that rtx is any more dangerous to us than any of the others, it is the most powerful tool we have at this time against WG. It is the most effective one, but it is also the last step in treatment at this time. Why use it if not necessary. I do believe in knocking down the disease quickly because of the side damages it can do, but I don't think you need a sledge hammer all the time when a nice nail hammer will do... Besides which, I keep hearing about it taking a few months, or more than one infusion, to really start working; don't know if this is true with everyone. I'm happy with the way cyclophosphamide started working right away to clear up my lung issues. Personally, I'd rather just take some pills than have to go somewhere for an infusion and sit there all day, not knowing whether it was going to help me right away. However, I think I was on the CTX longer than I needed to be and should have moved to the MTX sooner. I agree, though, I'd rather save RTX for if I really need it later.