View Full Version : Cellcept

09-03-2011, 05:14 PM
Hi everyone! It's been so long since I've been at this site though I keep you all in my prayers each night. I think I've seen every doctor in the St. Louis metro area in the past few weeks. That was July -- the month of doctors! My rheum finally decided I do have Lupus and put me on Cellcept. Within a week, I was feeling so much better. She also changed my Cymbalta to Savilla and my depression has left town! Such a blessing!! I can run more than one errand in a day and keep the house pulled together. I don't sleep most of the day away, though I certainly still have more fatigue than an average person. My gastro doc gave me muscle relaxers for my insides and the pains in my belly are much less. Grant it, I'm on a zillion medications but at least these are helping! I can actually make it through hair and makeup without having to go sit down between the process. She (rheum) is watching me for RA. Within the past month and a half my knee has gone out several times and looks like there's half an egg pushed under the skin on my outer knee. My knuckles are starting to swell and redden, too. I may end up with the whole enchilada - fibro, Lupus and RA. I've been saying for the past few years, "I can't be in this much pain for no reason!" Oh, and my pain doctor told me I have bursitus all over my body. Yipee. He's giving me shots next week and I'm praying with all my heart they help my feet. I swear, there are times I'd like to cut them off!

Good news is, I can hang out with my kid and do more things. I actually ran several errands in one day. That never happens! I also can keep up the house pretty well and my son gets a real dinner each night. My laptop blew up (not literally) so I've been away from the computer more than usual but I found a little cheap one that will do exactly what I need so I will begin writing again when I get that purchased.

I guess most importantly, I have hope again. I'm going way down on the Predison so that should be out of my life in the next month or so (by the way, I've lost over 10lbs just going down the 5mg) and there is a new pain medication out that can get me off of the two pain meds I take now. The light at the end of the tunnel is small but every day it is growing. These are such devasting diseases and when no one takes you seriously (because my ana numbers weren't high), it is as frustrating as it is painful.

Quick story - As I was getting an ultra sound of my heart the other day (too many chest pains lately), I told the woman conducting the test about my Lupus situation. She listened patiently, then as I was putting on my clothes she quietly said, "I have Lupus and take Cellcept, too." I put my hands on her hand and said, "why didn't you say something earlier, I have so many questions!!!" So we chatted and compared our hands and discussed the pain. God jumps in at the oddest places, doesn't he!

Take care to all and God bless!

09-03-2011, 07:20 PM
i am happy for your progress.
the pain may still be there,
but atleast you are heading in a direction.

09-03-2011, 07:24 PM
I am really happy for you! Looks like you are on the right track!

09-03-2011, 08:38 PM
It is good to see you here again. I'm so glad that you have finally found docs who listen. They are out there, and it is wonderful when we find them.
I hope that things keep going better for you and that you keep coming back to keep us posted.

09-04-2011, 04:51 PM
Your story is amazing & it touched me so. I too am on cellcept just started back up. It's good to know that the prednisone can be reduced once your on cellcept. Crossing my fingers the same will happen to me. Bestwishes to you on this journey throughout your life.

09-08-2011, 04:11 PM
First, thank you guys for your support and kind words. They are such a blessing! It's been nearly a month on the cellcept and the only strange thing is that my joints have taken on a life of their own! About a week ago I went to my rheum dr. because one of knees felt like I might have twisted it. I had no idea what happened but that's far from the first time I couldn't recall something! Anyway, I got x-rays and they showed moderate osteoarthritus. Within days of that appointment, it was in every joint in my body. I went without my pain patch over the Labor Day weekend (messed up and forgot to pick up the script before the holiday) and I could not believe the pain!!! I've dealt with fibro pain for over 4 years and know what to expect But this was absolutely different. My joints were swollen and hot. My feet and hands are pitch white except for the red in the joints so my Renauds was having a party. Simply put - I hurt so bad it literally made me want to throw up. For some reason, that's how my body reacts to extreme pain. I'm not going to call my rheum for awhile. I'm going to see what happens. I'm just tired of the "let me refer you to..." line. The main reason I knew Cellcept was helping is because I could make it to most of the doctor's appointments in August. Before, I would've been way too tired to keep even half of them.

Anyway, I continue to reduce my prednisone and it is very nice to see the weight coming off. Say a little prayer that whatever is going on now doesn't mean I have to jump back on the steriods!

Thanks again for your support!