I saw my rheumy in NYC this morn. When he went over the pathology reports from the derm (which showed positive DIF for lupus) he asked me to request the slides from the lab so he could look over them and have their derm (major teaching hosp NYC) look them over. I told him I have another appt with derm tmrw and he requested that she do a repeat biopsy. I suppose he will want those slides as well. He’s soo darn thorough! He did bloodwork today because next time I think he will be changing me to cellcept. He feels like the aralen (chloroquine) is not benefitting me fully.
What is your experience with cellcept? Are there a lot of side effects? I just want to feel better/ normal again!
Hi there. Hope you’re feeling as well as possible today. Unfortunately, my experience with Cellcept wasn’t a pleasant one. I felt nauseous to the point it interfered with my job as I was working at the time. But don’t give up hope. I know studies have shown Cellcept can be beneficial. It just wasn’t for me. Keep us posted and let us know how it works for you. All the best, Kim 
Cellcept made me sick, but I pray that it works wonders for you! Keep the faith! Lori
I have been on cellcept for almost a year. Yes I have had some stomach/diarrhea issues. But in time it got better. For me it was better than methotrexate or Imuran, I couldn't tolerate the side effects. But I have at least tolerated cellcept. I also started Benylysta lately, I got to the point of just wanting to have a life so I am willing to try.
Bless your heart! I've tried Imuran and Benlysta and they both made me very ill with infections. I'm trying injectible Methotrexate now to see if the side effects will be less. This is my third try with Metho. HUGS! Lori
everhope said:
I have been on cellcept for almost a year. Yes I have had some stomach/diarrhea issues. But in time it got better. For me it was better than methotrexate or Imuran, I couldn't tolerate the side effects. But I have at least tolerated cellcept. I also started Benylysta lately, I got to the point of just wanting to have a life so I am willing to try.
metho made me too ill (nausea) and couldn't do anything for days... am on cell cept but still not where I thought I should be in the feel good department... on waiting/approval list for benlysta (insurance stuff) and will tell... nothing seems to get me to where I can say oh this feels much better...
Wow…it seems like very mixed reactions to cellcept. I guess I won’t know until I try.
Jend719
When I saw your post about the biopsy slides I laughed to myself and then I saw NYC and got scared!
My first biopsy in 2007 was sent from Florida to a place in Buffalo New York and the doctor there misdiagnosed my slides. In June and August 2010 a second and third biopsy was preformed and sent to a world renown pathologist on skin lupus right here in pompano beach Florida. They both where positive for tumid lupus. Just because of a gut feeling inside of me, I had the New York pathologist send the first biopsy to the world renown pathologist and low and behold, it to was positive for tumid lupus. When I spoke to the buffalo pathologist about the first slides he assured me that he knew it was negative and when he asked me who the slides where to be sent to, and I told him, he said I was taught by that world renown doctor! LOL!
The one thing that has come out of my experience with lupus is this: I am very passionate about skin biopsies and how they are being done incorrectly. I learned the hard way and want to share my experience with everyone that has cutaneous lupus. After 25 years of skin rashes with no biopsy, a simple biopsy played a very important factor in getting a lupus diagnosis. I forced my demonologist to do the first biopsy because I was hoping and praying it would hold the answer. I guess God was in control that day, because my dermatologist told me it looked like a bug bite! Indeed it did, but my whole upper arm was inflamed and painful and so was all my other joints. I was so tried and had no energy and was running a low grade fever. I had no fight left. But I demanded it anyway and then demanded two more in 2010. In 2011 I was diagnosed with systemic lupus too. .
Anyone that has a biopsy for suspected cutaneous lupus should request to be punched twice, yes two punched biopsies at one time. The first should be tested as a regular biopsy and the second one should be test with a direct immunoflurecent stain and looked at differently from the first punch biopsy. From my understanding it is the only way a cutaneous lupus diagnosis, as to type, can be made.
If anyone is interested in the name of the world renown pathologist send me a message for his information. You can request where your biopsy slides go.
Okay I am off my soap box now… Best of luck Jend and I hope it all works out for you.
Deenie
Jend719
I forgot, I was put on five difference medications, imuran, Cellcept, chloroquine, methotrexate and plaquenil and my body didn’t like any of them. I had most all of the side effects on each one. I am presently not take any meds. Just medrol when I am in a flare.
Deenie
Thanks Deenie. The derm actually had done the 2 biopsies. I saw her today and she did not do another biopsy because of the steroid cream I had been using. She said it could alter it under the microscope. She said we will repeat in 2 weeks if not better. Rheumy had said that they have a “very good” derm there(NYC) and wanted him to review the slides. I’m not sure what he expects to find since it was already positive.
Jen 719
I have been on Cellcept for 8 years. I have SLE with Kidney and thyroid involvement. In the beginning i t brought my loss of protein numbers from 6,500 down to 1,200 (normal being >200). Soon after that I took on additional hrs and went through a stressful corporate merge. My numbers again rocketed so they tried increasing the dosage and I couldn't tolerate it (many infections and fevers) Dr has recently mentioned a prescription of Rituxan, but he never followed up or made any further steps. My recent kidney biopsy now shows a lot more damage then the 1st.