I don't take Cellcept but I take Methotrexate and have to have my liver and kidney blood work done monthly to make sure I am tolerating it okay. My levels have been slightly elevated but they said not to worry until it is off the charts elevated. Did your doctors tell you how high it was? Did they tell you to go off the Cellcept? What are they giving you instead? I would hate to see you have an increase in problems because you dropped the medication. Another big thing for me is to avoid alcohol and drink lots of water. Are you doing that as well?

I hope your levels return to normal.

Yup, I have to quit it cold turkey to stop the progressing of what it's doing to my liver enzymes (or to see how fast they drop). I have to re-take those blood tests in one week to monitor it. It was a significant jump from a month ago.

I hardly ever have a drink so it's not that. Like one drink in an entire month would be often for me.

I don't know what will be next. I am usually allergic to medication so I was happy I was not allergic to the Cellcept but it costs soooo much! I just refilled the prescription 10 days ago so that's a load of money down the drain if I can't even take it! :o( And I have to stop dosing down on the damn prednisone. Dammit! I was looking forward to one day getting my face back!

Very frustrating. I'm sorry you didn't tolerate the Cellcept. Have you tried Methotrexate? I do the injections. It is quite inexpensive. I get a month's worth for under $10. I get the needles for free too. Maybe that would work for you? I know Prednisone is cheap too. I am with you. I want my face back.

Big hugs.

I had methotrexate in pill form, which made me very sick and worsened my lung condition. I can't use it because it is hard on your lungs and my PM comes with ILD, unfortunately. So the fact that the Cellcept starting attacking my liver was scary since I already have two crappy organs to begin with.

I remember when I was coming out of my coma and my kidneys weren't working and I overheard a nurse saying, "Poor thing. They wouldn't take her for a kidney transplant since she's already going to be needing new lungs". Thankfully my kidneys did start working properly nearly a month late. I really FEEL for people who have to be on dialysis for years.

jfreeze, I had my first set of blood work on Cellcept and am going Monday for my second set. I'll surely let you know what mine end up being and if my reaction is the same as yours. I hope your levels go back to normal now that you're going to stop it for awhile. Keep us posted.
Blessings,
Kim

I just started in March. When I saw my specialist in April she asked me if I had been drinking before my blood tests. I just laughed. But now this month I was called by two specialists within an hour of each other about my latest blood tests from this past Thursday. BIG big jump in all liver enzymes. I sent the results to my cousin who is a nurse and she said unless I was a serious binge drinker or a drug addict that should not be happening so it's the Cellcept. Crap. I'm running out of options here! I will let you know what happens when I have those three tests re-done on Friday.

I hear you - there are only certain drugs we can take since we have lung involvement. Your doctor will know - I think prograf is another one they were thinking about for me (to add a 3rd drug). I was allergic to Imuran (I started taking in June and it was mid- July that I got a call from my doctor to come off Imuran immediately as my liver enzymes were off the charts). In fact, I had a liver ultrasound after that so you may want to have that done as well - to check that the liver was okay. Then they switched me to Cellcept. Not sure if you tried Imuran, if not that's an option or the prograf (Taccilomus) - let us know how it goes and see what your docgtor says - it's a process!.
Love Hugs and prayers :-)

I was violently allergic to the Imuran once I got up to the full dose - so not going there again! Once the enzymes come down (as they're supposed to), they were talking about re-starting Cellcept at a lower dose and see how that goes. I am a difficult patient. :o) My body does NOT like drugs. I should just hurry up and get better already.

jfreeze....I hope the lowered Cellcept does the trick for you. As I said before, I had my blood work done today and I'll be certain to let you know how I'm reacting to it. Don't give up hope, lowering the dose just might be the magic you need to get back on the road to feeling better. ((((((((hugs)))))
Blessings,
Kim

Ever since my doctor told me about what to watch for I'm sure I've GIVEN myself an upset stomach just thinking about it damaging my liver. So far I feel fine (you know, other than that upset stomach!) as far as my symptoms go. I'm happy to take less pills for the past few days, actually. I HATE taking pills.

I don't take Cellcept, just prednisone/hydrocortisone. But my liver readings (AST & ALT) were high last year. I tried a supplement called "Milk Thistle" that someone I know had successfully used a few years ago when docs were suggesting she might need a transplant "down the road." My understanding is that Milk Thistle has been used for liver problems at least 2,000 years. (Don't know for sure, as I wasn't around back then.) Anyway, when I went back for a recheck, my liver readings were normal again. Don't know if the drop was due to the supplement, or simply coincidental. I'll be having another check in a few months. If they're high again, I'll try the Milk Thistle again first. Don't know if it would help you. But, then again, it would be "more pills," which I also hate. Wishing you the best!

My husband takes milk thistle and swears by it. With all the medications he takes, he feels it definitely helps his liver functions and tests. He also takes a lemon daily in water to assist in the cleansing of the liver. He mentioned to me that I should begin taking it too, so I may just be adding yet another pill to the mix.
Blessings,
Kim

@eddiesgal
That's interesting about your husband using milk thistle. And I was also intrigued by the lemon water. My GP had told me to drink lemon water and I haven't been too faithful--just don't think about it, or sometimes don't have a lemon. Maybe I should be more faithful about it. Thanks.

Interesting ideas. I will check out the 'milk thistle' thing. I few extra herbs and spices can't hurt me, can they? :o)

While most of the time supplements are okay, I always check for negative interactions between my meds and supplements on the National Institutes of Health (NIH) website. They have a section for meds and supplements, where they list what you shouldn't take. For instance, that's where I found out that you shouldn't take St. John's Wort when you're on Prednisone, nor should you consume grapefruit or grapefruit juice while taking Prednisone. I was glad to know this, because I love grapefruit and grapefruit juice. http://www.ncbi.nlm.nih.gov/pubmedhealth/

I hope you can take the Milk Thistle and that it works really well for you. The person that I mentioned earlier took several milk thistle capsules per day, but her results even amazed the doctor. He told her that he had 4 terminal patients on whom he had used the strongest pharmaceutical meds available without avail. So he was going to suggest that they try the Milk Thistle, and then he even signed up for a medical seminar on alternative and natural treatments. However, the woman I know had to change doctors (new insurance), so she never found out if it helped those 4 patients.