I just went to the doctor yesterday. My cellcept was increased to 3000mg. I was put back on 20 mg of steroids. I also stared the zinc after hearing from you all. My mouth is very painful. I do use a child's extra soft tooth brush. It is also the worst part of my day having to brush. How sad is that? I do go to work every day because it helps me mentally. Many days I don't feel like it but once I am there I okay. I am gaining weight. I have to make sure I am exercising more. We all can do this and we will. God bless each of you and know that I think about all of you and what all of us are enduring. Hang in there and don't ever ever give up.

I can't wait to see the actual derm doc. I don't think I am on the right meds, and the combination of them all which is alot, is not what is going to help. I would like to see if I can get that cellcept, and try that. I hope this new doc can direct me to something possitive. Please keep me updated on how this cellcept is working. I am reading what you all are writing about it, and copying it down..thank you
jane anne

janeanned what kind of doctor have you being seeing? Is this the first time you will be seeing the derm doctor? Generally this who treats this because it is considered a skin disease.

I'll have to try that q-tip and toothpaste, taking care of my teeth has been another hard part the pain got so bad I just let it lapse for a while and depended on the mouthwash. They had me checked out by a dentist while I was in the hospital though to make sure everything was still okay. I'm now on 3000mg cellcept as well, and 90mg pred, going back to the doctor tomorrow and I'll see what comes now. That's the maximum he cellcept he wanted to get me to though and hopefully lowering the pred will work this time. The only problems I've been having with cellcept is insomnia and chest pains and trouble breathing more often, but then I have asthma as well and I can't tell if my asthma is getting worst or if it's because of the side effects. Anyway God bless and take care, still believing we can all beat this!

The blisters in the mouth are getting better. I also have trouble sleeping. I was up until 2 am and had to go to work. I have had a stressful week. I have a really difficult meeting on Thursday. I am dealing with very difficult parents. The meeting promises to last 8 hours. I suppose with the stress I will flare. Hang in there. Yes we can beat this.

I am starting to have some short term memory loss. Is anyone else experiencing this on cellcept? I first thought it was just my imagination but I am convince now it is not.

Hello from Alabama.

I just started a new topic asking about Cellcept. I just finished reading all of the posts in this discussion and have learned alot.

First let me say that after reading it all, you all now seem like close friends to me. I have been touched my many of your comments. And I do pray that we all find our cure for this.

I found out in January that I have pemphigus vulgaris. The outbreaks have been limited only to the inside of my mouth. Sores under my tounge, on my cheeks, along my gumline, and in my throat.

My doctor started me out on Cellcept and I get steroid shot every other week. I have gotten much better, but still have a long way to go.

He has adjusted my dosage of the Cellcept due to how I have responded. I started out at 2000mg a day, then reduced to 1000mg a day, and now I am currently on 1500mg a day.

At first the 2000mg was making me very weak, so we went to 1000mg. Then I got a little worse, so he put me on 1500mg.

I see my doctor every two weeks and will go again this Thursday. I feel that I am getting better again. So I hope I get a good report Thursday.

I share many of the same things you are going through. Depression, lack of sleep, feeling tird, loss of appetite. I have not been able to go to work in three months, but on somedays I have enought enery to do some work from home.

Vicki and myself seem to be having some sucess from cellcept so far. I think we got this about the same time and have been on cellcept the same time as well.

I have lost weight, 48 pounds so far, but I am overweight, so that has been a plus for me.

Please keep posting to this discussion as I would like to keep in touch with everyone's progress.

I'll pray for everyone here and please do the same for me. Stay positive!

Rob

Vicki, I have as well but I can't really tell if it's the cellcept or just me because I've always been just a tad absent minded. Will be praying for you all too! Trying to stay positive and keep the depression at bay, I am thankful to be able to be up and about a bit again. Still have a major lack of energy and trouble breathing at times but I can get around by myself pretty well again and I'm thankful for that.

Rob I am originally from Alabama as well. I do continue to work every day. It is a struggle. Once I am there it tend to take my mind off of my health. I having a very demanding and many days stressful job. I try to exercise some not nearly as much as I should lately. I get depressed at times but not much. I will not give in to that. I am definitely not losing weight. On these steroids I have gained weight. Hang in there. We will beat this. I am waiting on the day that I can say I am in Remission.

I hope everyone is doing better these days. I have not heard from you all lately.

It has gotten really quiet, how is everyone? I'm now on 4000 mg cellcept and 70 mg prednisone, still going down ever so slowly like 10 mg prednisone every two weeks. The 60's is usually where I flare so I'm hoping the cellcept is fully kicked in by then. Mostly everything is okay, I haven't had a new blister in a while now and things are healing up, only have one open spot left that's taking some time. Also, they don't know if the steroids did it or what but ever since the Imuran I've been having lower back pain and have to go to a normal doctor for that, they did some tests but they're just not sure what that is and the pain meds don't help it so oh wells. Just trying to get back to normal, I've been working more trying to get some strength back into my muscles, I even got Wii Fit today and started out lightly whew! Can't really keep saying oh I'll exercise when I get better, the way they talk it sounds like it's gonna be a while if we want to play it safe but I guess if that's what it takes, hope we all get to remission soon though. God bless you all.

I just mention in the other post that I am going to be put on the chemo Rutaxin. I don't know when you were put on the cellcept but I am having lower back pain. I have think it is the cellcept because I was on prednisone without cellcept and did have this problem. I do take celebrex so it tends to help.

I've been having a lot of trouble with lower back pain too, you can actually feel it spasm when it gets really bad. So I've been having to go to a normal doctor along with my dermatologist, and she gave me some muscle relaxers and also recommended a massage therapy where they're going to teach me some exercises to stretch out my muscles to prevent the back pain from coming back. Also went to see my eye doctor to get new glasses and now the pressure in my eyes is too high, I think he said 22 was bad and mine came out 30 also from the steroids augh! But now they're slowly getting me to every other day with 60 one day and 40 the next and so on, hope you're all doing well. God bless

Good to hear from you. I hope your eyes get better. I checked my eyes about two months ago. So far everything is okay with my eyes. I will go to the doctor on Friday to talk about Rituxan. I will let you all know how I am doing once I start the treatment. I am on 20mg of prednisone one day and 10 the next day.

Vicki,

I was diagnosed shortly after 9/11. I had wonderfully supportive doctors but you'll discover that every journey is different. I required very high doses of prednisone to bring the blistering under control. I'm allergic to most antibiotics, so attempts to substitute did not work for me. Today, I am stable and taking a very low dose of prednisone combined with Cellcept. One thing that I worked with my dermatolgist and ear nose and throat doctor on was a way to treat sores in the mouth. I suggested that we try injecting the sores, which never really responded to prednisolone or suspensions. We worked out a solution of Kenalog which was injected after the affected area was numbed with lidocaine. Cleared up those suckers in days! I'm grateful there are such good treatments available to us. The prednisone will no doubt help with tiredness -- sleep will be hard to come by and you'll probably feel like you're on a caffeine jag. And expect to gain weight. But once the blisters start to heal, you'll feel like yourself again. Good luck.