Imuran or Cellcept

[janNaz]

Hi everyone. I've been in "medicated" remission for about a year and half now, currently on 15mg of mtx. Recently, my lab results indicated an elevation in Alk Phos (?) @ 137. I had an MRI done on my liver and gall bladder and decreased mtx from 20mg to 15mg (also switched from injection to pills), as rheumy is concerned the mtx is affecting my liver. MRI showed liver irritation. I spoke with rheumy today and she wants me to stop the mtx and switch to Azathioprine. I asked about Cellcept and was told that is another option. We briefly discussed the side effects, and she mentioned Cellcept is a "newer" drug and there is a risk for tumors. After I got off the phone with her I remembered I thought I read somewhere that a side effect of Azathioprine is elevation of liver enzymes, so I'm wondering if this would cause more irritation or damage to my liver. I will ask her this when she calls back, but in the meantime what are your thoughts? She is leaving it up to me to decide on the switch, which I thought is kind of odd :unsure:, so I'm doing some research on the two and also asking for advice via email from Dr. Chung in SF. I appreciate your help, comments, opinions. etc.

[pberggren1]

I think aza has worked better for me in the long run. I would go with aza.

[janNaz]

Thanks Phil. My rheumy called me back this evening and answered my question. She explained that aza does pose a slight risk of elevated enzymes, but it's not anywhere near as high as mtx. She did say her preference for me is aza also, because it works in a similar way as mtx, therefore, would be the best choice in keeping me in remission. I just wish I knew if it is in fact the mtx that is causing the elevated levels (or is it the WG?), and I'm afraid of how much damage has been done. (One of the enzymes - ALT - was at 151! I guess normal level is 65 :crying:) Also, in my first post I mentioned an MRI, well, it was actually an ultrasound not an MRI. So frustrating, as we all know.

[pberggren1]

Are you on bactrim Jan? That could be causing the elevated enzymes.

[janNaz]

No, actually only mtx, folate, and the usual vitamin supplements. So, I guess mtx is the only culprit, since I've been feeling fine and bloodwork results for crp, esr, etc, have all been at normal levels. The only other concern is that I haven't been consistent with the vitamin supplements, but I don't believe that should have any effect on the liver enzymes.

[Rose]

HI

I recently had elevated liver enzyme for a few months. My doctor was not too concerned as they were still under 100 but he suggested that I might try Milk Thistle Extract as a few of his patients in the past have taken this with good results. I did some research first on the internet and came across a breast cancer survivor's forum where they discussed taking Milk Thistle Extract for elevated liver enzymes (with good results) as this is a common problem when on chemotherapy. So I decided to give it a try and my enzymes were back to normal within in a month. I am hoping they still will be within normal range when I have my next blood test in a few weeks.

[mishb]

I have also had elevated levels for a few months. How strange is this, that we all now are having elevated levels after taking MTX for so long.

Anyway, mine are back to normal .......all I had to do was stop my multi vitamins. My rhuemy said it was only the second time she had seen such a result caused by multi vitamins.

[janNaz]

Really..milk thistle extract and multi-vitamins...that's quite interesting. Thanks Rose and Michelle, glad to hear that both your levels returned to normal. Rose, where to you find/buy milk thistle extract, and Michelle, did you start taking multi-vitamins again? Well, I don't know what to think! This crap scares me!! I just learned this morning that my liver ultrasound showed a "fatty" liver-like appearance in a certain arear, which concerns my rheumy (and me!) very much considering I'm not overweight, not diabetic, and usually careful with my diet. What the heck?!? :confused1: So, the next step is more bloodwork and a referral to a GI specialist to determine if a biopsy is needed (big sigh..)

[Sangye]

Just because imuran is less hard (supposedly) doesn't mean it isn't hard on the liver. If you're already having fatty infiltration that is serious. It can escalate quite quickly. If that were me and my doctor didn't have a preference I'd go with Cellcept.

Being chronically immune-suppressed increases the risk for cancer, so all our drugs will do that.

I am also wondering if your doctor has considered letting you try going without an immune-suppressant. Is his plan to keep you on them forever? There isn't evidence that that will avert flares.

[Rose]

Milk Thistle Extract is readily available off the shelf at pharmacies here in South Africa so I think you should be able to get it in the USA.

I also have a fatty liver first seen when I had an ultrasound as part of the investigations when they were trying to find out what ailed me. They did not seem too concerned about it at that time but now in retrospect I think that was probably because there were other things going on of more concern..... my kidneys and lungs were shutting down!! I am sure my liver is much worse now as since diagnosis and treatment I have put on 15kg. and I am finding it almost impossible to lose weight.

[janNaz]

You know, Sangye, going without an immune-suppresant has also crossed my mind. It's a risk, but it's definitely something to address with my rheumy. I recall in the beginning she did say I'd be on an immune-suppressant for the rest of my life, so I don't know if she'd be open to the idea. She might tho...afterall, she also said in the beginning that I'd be on ctx for at least 1 yr, which I objected to and put her in contact with Dr. Chung, and then changed her mind and I was on ctx for about 6 mos. Strange thing is, Dr. Chung said she prefers aza over cellcept for me as well....so I don't know what I'm going to do at this point (but I'm leaning towards the cellcept, I think).

[mishb]

Really..milk thistle extract and multi-vitamins...that's quite interesting. Thanks Rose and Michelle, glad to hear that both your levels returned to normal. Rose, where to you find/buy milk thistle extract, and Michelle, did you start taking multi-vitamins again? Well, I don't know what to think! This crap scares me!! I just learned this morning that my liver ultrasound showed a "fatty" liver-like appearance in a certain arear, which concerns my rheumy (and me!) very much considering I'm not overweight, not diabetic, and usually careful with my diet. What the heck?!? :confused1: So, the next step is more bloodwork and a referral to a GI specialist to determine if a biopsy is needed (big sigh..)

JanNaz, I only found out on Monday about the multi vitamins and no, I have taken any again.

I told my daughter that I should wait a little while and then take them again to see what the results would be, but she told me that I have enough going on in my body without trying to experiment with my liver at the same time
........good point and well presented by her, I must say

[aewaustin]

I have done well with Aza and it has not caused any side effects that I am aware of. On the other hand Cellcept caused huge issues for me, felt like an electric current was going through me and I did not sleep at all for a month. It was horrible and made me crazy. I just tell you this so that you are in tune with what is going on and know that Cellcept has caused major issues for at least one person.

[Sangye]

You know, Sangye, going without an immune-suppresant has also crossed my mind. It's a risk, but it's definitely something to address with my rheumy. I recall in the beginning she did say I'd be on an immune-suppressant for the rest of my life, so I don't know if she'd be open to the idea. She might tho...afterall, she also said in the beginning that I'd be on ctx for at least 1 yr, which I objected to and put her in contact with Dr. Chung, and then changed her mind and I was on ctx for about 6 mos. Strange thing is, Dr. Chung said she prefers aza over cellcept for me as well....so I don't know what I'm going to do at this point (but I'm leaning towards the cellcept, I think).
Dr Seo says that everyone should have the chance to try life without the meds. It's a risk, but so is staying on chemo.

Why did Dr Chung favor aza over Cellcept?

[Sangye]

I have done well with Aza and it has not caused any side effects that I am aware of. On the other hand Cellcept caused huge issues for me, felt like an electric current was going through me and I did not sleep at all for a month. It was horrible and made me crazy. I just tell you this so that you are in tune with what is going on and know that Cellcept has caused major issues for at least one person.
Those are very odd side effects. Never heard of that happening with anyone else on here. Typically the only side effect of consequence is that Cellcept can cause diarrhea. It's mild in some people but can be severe. If so, they have to take you off of it.

I don't want to discount your experience (it sounds awful), just want to make sure people know it's not at all a common one.

[Debbie C]

As everyone knows I do not do well on any meds..if there is a bad side effect I will get it.I was recently put on 15mg MTX and was having stabbing headaches in my forehead then sometimes the whole top of my head just hurt.. and since I had a stroke and about 5 TIA"S before I was a little worried. When I called I talked to reumy this he told me to stop taking it and just stay on the preds ( which I've been on 5 mg. for 2 weeks now )
I asked him if I needed something else besides just preds and he said "Well you had a RTX infusion and you seemed to have gotten better with that and they usually last up to 8 YEARS !!!! he said also said I'll probably be on preds the rest of my life !! I go see him the end of this month so I get things straight then. I have a appointment with in ent tomorrrow and a ct scan of my lung on the 17th. I really need to make a appointment with an eye dr. because my vision is starting to get real bad espcially my left eye. I myself don't believe I am in remission or if I ever was. The last scan I had still showed a nodule in my lung so I don't know how he calls that remission and I am sure as hell not gonna be on preds the rest of my life !!

[elephant]

I have been on Cellcept for about 3 1/2 years and I have had no side effects that I know of. I have to stay on Cellept for the rest of my life since I had a kidney transplant 1989. I'm also on Cyclosporine ( immunsuppresant) and is it used for anti-regection.

[Sangye]

As everyone knows I do not do well on any meds..if there is a bad side effect I will get it.I was recently put on 15mg MTX and was having stabbing headaches in my forehead then sometimes the whole top of my head just hurt.. and since I had a stroke and about 5 TIA"S before I was a little worried. When I called I talked to reumy this he told me to stop taking it and just stay on the preds ( which I've been on 5 mg. for 2 weeks now )
I asked him if I needed something else besides just preds and he said "Well you had a RTX infusion and you seemed to have gotten better with that and they usually last up to 8 YEARS !!!! he said also said I'll probably be on preds the rest of my life !! I go see him the end of this month so I get things straight then. I have a appointment with in ent tomorrrow and a ct scan of my lung on the 17th. I really need to make a appointment with an eye dr. because my vision is starting to get real bad espcially my left eye. I myself don't believe I am in remission or if I ever was. The last scan I had still showed a nodule in my lung so I don't know how he calls that remission and I am sure as hell not gonna be on preds the rest of my life !!
Debra, surely either he misspoke or you heard wrong. Rtx works for 9-12 months. He probably meant 8 months.

Just like with ctx, some people do go into lasting remission after getting rtx, but no one can promise you 8 years. It hasn't even been used that long to treat Wegs!

[Debbie C]

yea Sanye .he through me off when he said that cuz I remember everyone on here saying it doesn't last that long. And I only had 1 infusion. We will see at the end of the month when I go back up to CC to see him what the next move is. I hope u r doing well in yr new place and backyard friends :biggrin1: