So very sorry jaeanned about your eyes. I also as having a little eye problem I went in to see the eye doctor and he said they were find. I had been waking up with my eyes all glued together. I started to use an eye drop and they got better. I also use the Biotene. I do take vitamins but at night because they make me sick and a calcium tablet to replace the calcium that I am losing. I try to exercise first thing in the morning and in the evening. This makes me feel better. I just try to keep a positive attitude for my family as well as myself because the last thing I need is to try to take care of their emotions. I just can't do it. My husband is having a hard time. Last night I actually had some energy left at the end of my work day. I grilled t-bone steak and made bake potatoes for him with his other favorites. Then I crashed no more energy was left. I thought when I was literally crawling into bed you should be receiving some kind of Ocar for tonight's performance.

Just went to Roche the makers of cellcept website. if any of you are taking the drug you can get a coupon card for $100 to be used until end of year off of your prescription each time. Must be expensive. I will see. There are some who calls it a chemo drug and others who do not.

That is so neat that you were able to do that. I think that is why I bake all the time, and clean so much. To keep busy, feel useful, and make my family not see as much pain that I may be going threw at that time. And the pain for a little while seems to slow down when my body is working over time. I wish I could get a job. I am so sick of sitting here. I am going to make a blanket today with my kids and that should be fun. I hope your husband liked his treats. I am going to start cooking healthier meals, and not all the baking things so that way maybe I can maintane better weight, and it'll be new for me to cook and not bake. I take a calcium to, and I found that the liquad tablets don't upset my stomach like the solid type do. So maybe try that. How many mg do you take of the calcium? I am wondering if I am taking enough or maybe need more.. thank you...jane anne

Vicki let me know how that med is working out for you. I think my doc needs to put me on something that actually works. Maybe I am not giving the one I am on long enough to work, or maybe I just need one that does. It must be pretty harsh for some people to call it a chemo drug, and I wonder how safe it really is, but are any of these. Good luck to you, and I hope this works. This is just all so scary to me..it's like I have so much to ask or say, and like rt now am speechless to all the suffering we have to deal with. God is with us...

I will actually start the 2nd week of March. My doctor and most of his staff (doctors) will be gone the first week of March. He doesn't want me to get sick on this drug while he is gone.

Hi Jaeanned - Hope your eyes are getting better now.

My eyes started remaining very dry for some time. I have started using a homeopathic eyedrop called "cineraria martima" and thye seems to be working well. It is supposed to be very good for most eye related ailments.

I leave in Mumbai (India). The homeopathic medicine is easily available here in stores. It must be avilable online as well.

Good Luck,
Ash

Started Cellcept yesterday. So far no problems.

Hello all. I was recently diagnosed with pemphigus as well. I too just started Cellcept a couple days ago, along with 60mg of prednisone a day. So far no problems, although I wish it would work faster.

Welcome mlhawk23
I am just on the cellcept no prednisone. I am taking 500mg 3X /day.
I hope this works. Trying not to get infections while on the drug will be the biggest task. This is day 3 for me. so far so good.

Hi Vickie,

I hope the Cellcept works for you.

I think you were on Pednisone for some time. I was curious - How long you took it and what was the dosage.

I was told the stopping the steroids suddenly is dangerous. I hope you reduced it gradually. I am consuting a Derm who has handled many Pemph cases. So just wanted to share what I have learnt.

Good luck & take care.
Ashish

I was on high dose of prednisone for a short time. Most of the time I was on about 5 mg. The doctor who is treating me for pemphigus has never put me on prednisone. I have had this doctor since January. He is at Emory University. He really is trying to keep me away from the steroids. I have not had any side effect from cellcept. It will be one week tomorrow. I just hope and pray every day that this will soon go into remission. I am not angry or bitter or spend time feeling sorry for myself. I believe I will go into remission. I live each day in light of that.

Good luck vicki. Hope it works well for you.

Hey, I hope the cellcept works out for you too. I was on it several months but it didn't quite kick in for me. I didn't really have any bad side effects and my doctor says it's a Godsend for pemphigus very mild with not too many bad side effects, the worst was lose of appetite but with the steroids I'd just have a huge appetite the next day as well. About the Azathioprine/Imuran that's what I'm on now I was just reading your side effects and was shocked to find it describe how i am now (why I haven't been on in a while) very hard to sit down here as well as use the bathroom it's such a pain and a struggle, but the thought of a catheter scares me, I just got rid of an MRSA infection and don't want any more infections.. I thought it was just due to my last flare up as to why I haven't been able to sit down without pain in weeks but anyway my doctor says Imuran isn't working and will have to confer with another doctor for me. Hoping for the best. I really like my doctor as he wants to keep me safe and make me better so I hope I don't have to change docs. Will find out tomorrow hopefully.

I read you all stories and I am so sorry that you all feel so bad. I try so hard every day to push myself. I get very tired but I keep going. I just have to believe that this will get better. so far I have not seen any real results of the cellcept. I have only been on it a little over a week. I hope we all go into remission soon. I am going to fight this with all I have. Hang in there and don't give up.

I agree, hoping and praying we all go into remission and that it works, sometimes all you can do is keep pushing yourself and praying and waiting. I'm off the Imuran now and will be getting a new doctor sometime this week my old one will stay involved back to 100 mg prednisone for a couple days. Good luck everyone.