HealingWell
Search Close Search
☰

The Cellcept Separation Vent

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/3/2012 2:05 PM (GMT 0)
Hi Everyone. I’ve been having a rough go lately. You may remember that in 2011 my gastric by-pass closed off and was on liquid food and medication via pic line for 10 months. In January 2012 I had to taper off Cellcept and prednisone prior to having the gastric by-pass reversed. I decided to stay off Cellcept a while, which rheumy agreed was fine. In March I was hospitalized once for pneumonia and once for sepsis (bacteria growing in my blood). While there the multiple bags of antibiotics successfully eradicated all my normal intestinal flora and I had more intense diarrhea than I thought was possible. To cover the possibility of lupus pneumonitis they had me on 300mg of prednisone a day. Forward to May. I was getting my strength back when I started having lots of lupus symptoms: fatigue, pain in fingers and back, acute hair loss (although there’s nothing cute about it), major memory loss, one pupil larger than the other, a small, red, scaly patch on my face, and worsening depression. By June I had tapered my pred to 7mg and was slammed into bed. I saw my rheumy last week and he had a dilemma. How to place me on a prednisone sparing drug, but leave me enough of an immune system to fight infections. Ultimately he put me back on Cellcept, but only 500mg twice a day instead of the 1500 bid I was on for the last 2 years. I’ve been on Cellcept for a week now, managing the side-effects and feeling a slight improvement. 2 days I didn’t wake up exhausted. I’m now optimistic and glad to be popping my old friend along with my multitude of other drugs. If you’ve read this far you’re a real trooper.      Love, Butterflake aka Donna
Posted 7/3/2012 6:41 PM (GMT 0)
Hi Donna,
Glad you are feeling on the mend. It's about time the health gods look favorably on you!
Posted 7/3/2012 9:19 PM (GMT 0)
LOL. Thanks for the laugh.
Posted 7/3/2012 10:36 PM (GMT 0)
Wow. You have been through so much. Glad to hear that things are improving for you!
Posted 7/3/2012 10:47 PM (GMT 0)
I'm glad things are looking up for you.
Posted 7/4/2012 1:33 AM (GMT 0)
Hi Butterflake,

I am really happy for you! Makes me wish I could have been still taking Cell Cept. It was working beautifully and I was tolerating it really well...everything that is except my white count!!! Saying good-bye was hard, especially since I had been weaned off the Prednisone and was looking at saying hello to Prednisone again...for the fourth time!!!! Currently, I am on Imuran and tolerating it pretty well. I do feel better, but the real test will be whether my white count can hold up. I see the Rheumatologist Monday and we'll begin the process of tapering the Prednisone back down...again. This is quite the amazing dance. Just can't figure out if it's a waltz or a polka :)

Laura
Posted 7/4/2012 4:01 AM (GMT 0)
Laura, It's the Virginia Reel! :))
Posted 7/4/2012 9:17 AM (GMT 0)
Yeah, lupus dances in my lungs and my brain, but it may be a tango for me...intertwined with unrelenting passion. Laura, I haven't got the results of my blood work since back on CellCept. I'm happy Immuran is working for you. I haven't tried it in years, but when I did it had no effect on me at all. No better, no worse. I really want off prednisone. We all need to have pred ready to go when it's needed most. Not to mention that darn buffalo hump that makes me look like Quasimodo.

Thanks for the well wishes and laughs Lynnwood, Fran, Laura and Joy!   Love, Donna

Posted 7/5/2012 3:27 AM (GMT 0)
I like the idea of the Virginia Reel.....that really describes it. Lately I have been struggling with a bit of moon face (although it could be age :) and weird hair, including more loss than usual and so much thinning!!! People that mean well say to me "Well, at least you started with so much." I don't think they truly understand what we go through. Thankfully, there is wonderful support here to lean on and people who do understand. Ditto to Lynnwood, Fran, Joy and Donna!!

Laura
✚ New Topic ✚ Reply