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replace Imuran w/Cellcept?

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Posted 7/15/2008 1:48 PM (GMT 0)
So my I may need to go on Cellcept for my kidneys and my Kidney Doc talked to my GI and they dont want me to be on Cellcept and Imuran at the same time (both are immune suppressing drugs).  So, my GI "thinks" the Cellcept will help me, but I do not want to flare up again.

So I am going to find a second opinion.  If I need to go on Cellcept, then I think my only options are pred & remicade, unless the Cellcept itself will help me.  Which I may just try to see if it does, but I want to make that decision myself.

I just wanted to see if anyone else ever took Cellcept and what your experiences were/are?

Thanks!

Posted 7/15/2008 3:31 PM (GMT 0)
I don't have any idea on any of those meds, I am interested in how you got your kidney and GI docs to talk tho. I currently want to try something that will hopefully put me into remission and the GI doctor said I have to talk to the kidney doctor myself to figure out what's "kidney safe" for me. It's very frustrating.

Keep us posted I'm very interested in your progress, not too many UCers have kidney trouble on top of the UC.

I'm not familiar with MCD, is it possible to correct the issue? Mine is FSGS (trust me you don't want the spelling LOL) and my damage is perminent. They do tell me that it's immune related but at this time they are only trying BP meds to keep my kidneys from working harder and burning themselves up more. I never knew that your kidneys have their own BP that's different than what they get off your arm. (o: Funny the things we find out with our diseases isn't it.
Posted 7/15/2008 3:54 PM (GMT 0)
Hi Kim,

I found a great site at inspire.com for information about MCD and FSGS. If I do not respond to the Cellcept they will do another biopsy to see if I have FSGS, the early stages of FSGS look like MCD.  MCD is supposed to go into remission within 4 months of treatment, I am at month 10, lucky me.

I am sorry that you have FSGS, from the posts I read at inspire it is a very difficult disease, though I would ask your Nephrologist if you have the end tip type of FSGS, there was some discussion on that and I think if you have the end tip (or I may be using the wrong phrasing) it is the better kind of FSGS, I think there are a few types within that.  I am surprised that you are only on 7.5 mg of lisonopril, that did not help me much and that seems like a low dose (to me and all my medical wisdom =) ???

My Nephrologist was the one to contact my GI originally, b/c I wanted to get off Asacol believing that caused my MCD (well sulfasalazine another 5ASA drug) and my Dr's are all part of the Dartmouth Hitchcock Clinic in Nashua, NH, so they all have access to all my records, though my Neph is at a different building they have a Kidney Center w/Dialysis and everything in the building.

Now that you say that your doc's wont talk, it makes me angry, they should talk, my friend is a nurse at Mass General Hospital and where I am going for my second opinion and says that is one thing they are good at there is talking to the other Dr's. Maybe it's b/c they are different practices, but even so, your Doc can better medically explain what is going on, than you, plus it's like playing the telephone game, your GI would get the info second hand from your understanding of what your Dr. said.

Can I ask you about your pregnancy w/FSGS? Did you know you had FSGS while pregnant? If my MCD never goes away (in a small percentage it does not) I am concerned about having children, I know I can't be on the drugs while pg or breast feeding but am curious what others do.

Posted 7/15/2008 7:47 PM (GMT 0)
I'm on such a low amount of Lisinopril because I have a normally low BP. We started at 10 and I bottomed out at 85/50 so they backed me off to 2.5 2x a day. I've responded well to that so I moved up to 7.5 but I average about 100/72 right now and they are leery of dropping me too low again. I have tip and secondary level scaring that's permanent, I was lucky that they found it first biopsy, it's not one of the easier ones to find because of it's random nature is what they tell me. No idea how long it's been there, probably for a long time. Becareful with the kidney biopsy they can be tricky. I bled the easiest way for the body to git rid of (so they tell me) but the hardest way for them to find. . . .right down into my bladder. I lost 4 units of blood and passed out on them before they caught it. If you bleed that way it doesn't show when they check on a scan and because it's on the bladder it doesn't cause pain. They believe that it was there when I got pregnant they just didn't know about it.

I really had no issues with the kidneys until the last week of my pregnancy. Out of the blue my bp that had been steady 112/78 to 120/82 depending on the time of the day . . . . was up to 135/96 so they gave me over the weekend (Christmas holiday weekend) to see if I could rest enough to get it back down and on my due date 12/28 they started induction because I wasn't down and I wasn't feeling really good. They wanted him out before he started showing signs of stress too. The only problem with the kidneys was the magnesium they gave me to lower the BP shut the kidneys down on me completely, it just meant that I had a deadline for birth or end up with a C section and I had a bad headache from the high BP. I was able to deliver literally 6 minutes before they were going to take him and the headache went away within the next 24 hours. I was kept there until my creatanine (sp?) level was back to 2 and then I was released (6 days after giving birth). That was what got them started into looking for the problem, they never bounced back to normal, they figure they missed it for so long because I have no edema, low BP and none of the other symptoms. Doing blood work is the only way they found anything, now I do spill protein but by the time they were checking that I was already pregnant so it never sent off any alarms (o:

I was allowed to nurse for a full year because altho the kidney functions were down to 27% they weren't getting any worse so as long as I subjected myself to bi-weekly monitoring and agreed if things got worse I would stop and take what I needed to to maintain kidney health . . . . they allowed me to stay off meds to finish nursing.

My UC was also a dream while I was pregnant and nursing. I had normal formed BMs at standard intervals the whole time. I really hated giving up nursing and going back to normal UC life LOL.
Posted 7/16/2008 12:18 AM (GMT 0)
Coincidentally, I saw my nephrologist yesterday also and we ended up talking about this issue -- almost. It's not the exact same issue because I took cyclosporine instead of Cellcept and also because I'm not taking cyclosporine anymore.

Anyway, I told my nephrologist that I would most likely be taking Imuran soon and he said that if I ever had to go back on cyclosporine, we would have to monitor the dosages of both drugs to avoid over suppressing my immune system. I would definitely be taking both though, but I'd probably be on lower dosages of one or both. At least, that's what it sounded like.

I've seen mention of cyclosporine being prescribed for UC more than Cellcept, but Cellcept is quite new. So, I think it's very possible Cellcept can help your UC; there may just be not as many data points. For me specifically, cyclosporine at the dosages for my MCD (I don't know the dosages given for UC) was not enough to put my UC completely in remission. It did, however, make it very mild -- mild, in fact, to the point where the colonoscopy biopsy report only mentioned non-specific colitis and it took 6 months between first signs of colitis and diagnosis of left-sided ulcerative colitis. Recently, my nephrologist stopped my cyclosporine and I noticed a worsening of my UC.

If you want to look at the half full glass, it's quite possible your MCD is steroid resistant and an immunosuppressant could help you much more. At the 9 month mark of my MCD, I was spilling protein while on prednisone and my serum albumin was low. As my nephrologist switched from steroids to immunosuppressants, he said I might need to be sticked again to check for FSGS if cyclosporine didn't work. Well, it worked. I didn't need another biopsy and I was quickly down to spilling 0g of protein.
Posted 7/16/2008 12:52 PM (GMT 0)
Interesting, I was told that both my UC and Kidney were immunodeficient diseases but one wasn't connected to the other...
Posted 7/16/2008 2:10 PM (GMT 0)
the UC and Kidney disease are not caused by the other one in and of themselves, but some of the meds and treatments are the same.

I don't want to go on cyclosporine b/c it can cause fertility issues in women, so I hope the cellcept works, if I have to go on cyclosporine, I think I will need to freeze some eggs first.

I just think it's so weird my UC responds to pred but not my kidneys.....

Chicubs - how did you feel on the cyclosporine?

 

Posted 7/17/2008 3:52 AM (GMT 0)
Really? I've not heard of any issues with fertility and cyclosporine. Cyclophosphamide, however, I know can cause temporary sterility and, rarely, permanent sterility.

I am in the middle of a 5 week taper of prednisone for my UC and I notice some improvement. The last time I took it for MCD, it's effect was minimal. So I guess it is possible prednisone can help my colon more than it can help my kidneys.

PeanutMom - I don't think there is a connection between my kidney disease and my bowel disease other than there is something wrong with my immune system. I think my kidneys and my bowel are the unfortunate victims of my immune system gone haywire.

Beth - I thought cyclosporine was great. Went to spilling 0 protein with fairly benign side effects.
Posted 7/17/2008 12:45 PM (GMT 0)
Ken - I may be confused w/the names, i'll look into it again.........they all begin w/"C"! I hope to get into remission very soon for my MCD.

Good luck w/your pred taper, what are you at right now? I just went from 40mg down to 30mg and hope to get back down to 5 again and then get off of it. Last taper down, it was so hard to walk, this time I am walking every day at the gym so I hope to avoid that.
Posted 7/17/2008 9:53 PM (GMT 0)
I am at 10mg right now for another 1.5 weeks (2 weeks total), then I switch to 5mg for a week. I didn't have any problems with my last taper, so I'm hoping this one will be fine also.
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