cellcept no longer working..what now?

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New Member

Date Joined Jan 2007
Total Posts : 17
   Posted 3/21/2008 3:29 PM (GMT -6)   
Hello all
This is my second flare up with lupus nephritis. I'm 35 now but the first time happened when I was in my early 20s.
Believe it or not but I went into remission the first time using imuran prednisone and plaquenil primarily.
I was in remission for most of my 20s and up until I was 34. Probably for about 10 yrs.
This time around we did a round of cytoxan in the hospital and then started cellcept afterwards in Jan 2007. My creatinine went from 3.9 down to 2.2 in Jan 2007 after the first round of cytoxan. Ive been on cellcept 1000mg twice a day for a year now.
Creatinine has progressively gotten worse with the cellcept though. March 2007 2.5 Jun 2007 2.9 Nov 2007 3.2 Feb 2008 3.4 now it has jumped to 3.9 in March 2008.
If I went into remission on Imuran and plaquenil in the past....why wouldn't my doctor recommend it now? If the inital cytoxan helped drop my creatinine...why not try it again?
He says if my creatinine gets any worse I need to get a new kidney. No offense but I think he is a little quick to exhaust other alternatives in my opinion.
It also seemed to me like he didnt even know about cellcept until I told him about it after researching on the internet. I love my nephrologist but he does questionable things like dropping my prednisone drastically. He told me I could go from 60 mg to 30 without tapering. I couldn't believe it!
I don't know but it seems to me that cellcept may just not work for everyone.
Could I have some feedback about others and their experiences? What should I do? Should I get a second opinion? He feels this is just the natural progression of my disease.
I very much want to keep my kidney....

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 3/21/2008 6:59 PM (GMT -6)   
Hi Haji, All though I don't take the same meds I understand the concern. It''s so hard when you have a doctor you like. I just love my doctor but she does somequestionable things as well. I am going to try to find a doctor that takes my insurance and get a second opinion. I don't think there is a thing wrong with that. In fact I think it's a very good idea. Doctors are miracle workers. They don't know everything. I would rather have a doctor with a terrible bedside mannor that could help me feel better than one that as a great personality and leaves me sick all the time.
Mine drops my predisone down quickly as well. from 30 to 5 in one week.
So yes get a second opinion is my thoughts on it. Let us know and do it soon since you have kidney involvment the sooner the better.
God Bless
Lupus like symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4.,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!

Forum Moderator

Date Joined May 2005
Total Posts : 6934
   Posted 3/21/2008 7:56 PM (GMT -6)   
I may be wrong, but I think larger drops in prednisone are ok when it's a larger dose to start with. There is also a time factor -- how long you have been taking a large dose.

I know we're supposed to take it down slower once we get to the < 15-20 mg range.

Cellcept worked great for me, but Imuran did nothing -- funny how different we all are. Drs do want to give it quite a chance before changing course. I have no idea why he wouldn't want to use Imuran again for you -- it does seem like it'd be worth a try. But maybe he sees some evidence of damage the Imuran did and doesn't want that to get worse?

I do think a second opinion is in order -- is this a rheumy guy or a kidney person? I think I'd check in with both.

Hope you get some better answers soon,

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Veteran Member

Date Joined Apr 2006
Total Posts : 1296
   Posted 3/22/2008 2:35 PM (GMT -6)   
I think getting a second opinion is in order.  Would also recommend seeing a nephrologist as well as another rheumy.
You can drop prednisone dosage in larger increments at higher doses but it is usually done in 10 mg drops every 2-4 weeks down to about 30mg.  From there in 5 mg increments every 1-2 months down to 20mg, then in 2.5mg increments and then in 1mg below 10. 
There is some variation but that is a common tapering scheme.
You are right in asking why your doctor would not want to use prednisone and imuran which worked before.  Not that any of us wants to take those meds by choice but if they work you can taper and they are usually tolerable in lower doses.  I take them.

Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller

Post Edited (Bsime) : 3/22/2008 1:40:51 PM (GMT-6)

New Member

Date Joined Jan 2007
Total Posts : 17
   Posted 3/30/2008 5:11 PM (GMT -6)   
thanks for the feedback everyone. I have another nephrology appointment on the third. I will bring up the notion of trying other meds as well and will follow up with everyone.
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