I just spoke with my doctor today. He wants to put me on cellcept or azathioprine i have to decide which one to take. He is trying to avoid prednisone. I don't want to have to stop working. I get tired but it keeps me going. Hang in there.

Hi Vicki. I just read what meds they want you to chose from, and got kind of worried. But your body is different than mine! The Azathioprine 50mg twice a day is the one that put me in the wheel chair, and chateder in. I couldn't walk,stand,sit on toliet cause the pain from sitting was just crazy in itself. I would wake up my friend in dire despair from the pain in the joints,body. I was wired all the time. Worse cause I am still on the prednisone. But I am asking you please be careful with this drug. As soon as the doc took me off of it for a week, of course I still have bad pain, and am sick, but nothing was as bad as that. I can't fight this bladder infection cause of the suppressed immune now, and oh it is so hard to explain what I went thru on that med..good luck, and please let me know if you take it and if it did work for you...
jane anne

I just have a question for everyone. Did you notice the weight gain from the prednisone? I mean not a little gain, I am talking a major change in a very fast time? And if you did how are you all managing it? I was around 115 and am now 150. I don't know if I am eatting cause I am sitting home bored, or if I really am starving. My face is so swollen I don't even see me in the mirror anymore. The reason I ask is cause I notice so many of you on it to, and even on higher doses than my 60mg a day. thank you

I have not gained as much weight because before I was diagnosed I would take myself off the medicine to prevent this. I know that it is common. I had a friend on it and she really gained the weight. My doctors are trying very hard not to put me on this. I have decided to take the cellcept. I have not started yet. I was on rate my drug most people seemed to have a great deal of hair loss with imuran. I didn't see as much with cellcept. I really will rely on God to get through these days. Becstrom, you were on cellcept. What were you side effects. I know it didn't work for you. Oh by the way I have started to exercise more. I don't feel up to it but I make myself. I generally feel better after I do. I can't afford any more weight gain.

I don't know anything about the med you are starting, but I hope it works. Something has to give. And I have read about the hair loss to. I cut 10" off and saved it for a wig if I need one. I hope that doesn't sound crazy. I should start some kind of exercise. I have that abblounge. Never used mind you..ha ha
Well you all have a GREAT day, and God Bless.

i had a flare up today. I am sure it came due to stress. Yesterday was hard to hear the drugs I would be taking and the side effects. I am trying very hard to keep a positive attitude. Yesterday I cried for the first time since I found out what I have. I was in much better spirits today but the flare-up is here.

Vicki I got your comment earlier, and wanted to reply but I was not feeling well myself. But that's really not the point. I am sorry to hear that you have this flare up, but I think it is healthy to cry and let out all this frustration that we hold in. We keep talking about a poss. attitude, and ya know sometimes it's just to hard to make that happen when we are all flared up, and scared of what may become of us. So let it out girl and cry..your allowed..lol. I hope the new meds kick in and do some a.. kicken to make you feel better. I felt pretty close to the same as you the other night. I just didn't want to do this anymore with all these drugs, and there side effects, so I was telling myself dumb stuff that I wasn't going to take them anymore, and leave it all up to God. well low and behold I know better than to not get docs help and With God, and all your support I can do this, and so can you...have a good night and get some rest..
jane anne

I am sorry that you were feeling well. Who knows better than we do what that is like when you aren't feeling well. I plan to do what the doctor has asked me because I realize he is God's instrument. I was looking up natural herbs for this. Have you heard anything about natural herbs and the treatment of this. Get better and know that I am praying for all of us.

Good Morning. I just woke up a bit ago having the feeling that water kept running down my face. Well it was. My left eye is swollen almost completely shut, and the rt eye was very swollen to but has seemed to at least go down a bit to let me see. My face right now is so swollen and distorted. What they hey is this from? I keep thinking it's Sat cause of the kids not having school, but thank God it's Fri so I can call the doc. asap. Vicki, I dont now alot about herbs when taking all these other meds we do. I talked to the pharm yesterday and he said to make sure and talk to your doc because some of them can do alot of harm with what we are on. The other thing I was told was to NOT take potassium. IT could Stop people's heart when on steroids. So that freaked me out, and I put my bottle away. I was trying the vitamin to stop all the muscle and joint cramps, and thought with eatting natural foods with this vitamin, and taking a supplement it would work, well it isn't worth all that for a vit pill. So that is another thing I am going to sit and ask my doc. I want to know if there is a natural was to have bowl movements without all the harsh laxatives and antigas products to. My mom is a naturalist and is researching all sorts of herbs, and natural healing for us. She keeps telling me that STRESS IS NUMBER ONE IS HELPING THIS. Two would be our diet and that is internal and external. Stop all the deoderant like products and even cleaning supplies with all the chemicals. She actually found this stuff to help w this disease. I will for sure keep you up on anything else she tells me. Have a good day, and I hope you are feeling better. I enjoy talking w you..jane anne

OH, I just wanted to tell you that I also totally trust that it is very hard for these docs to do what they do, and that they are getting the help from God. So I liked that you wrote that in there. Sometimes it's just easier giving up that fighting all the time. But you are right. My doc is an angel to me, and i don't know what I would do without him.

Hi,

I am new to this forum. Rather than starting a new tread I thought of joining this ongoing discussion. I have gone through all the posts here on Pemphigus and I am more nervous now.

Have been suffering form sever mouth ulcers since Sept 2008. Got diagnosed as Pemhigus in Jan 09. Doc started with 30 mg/day Predisone and after a week added 100 mg/day Cyclophosphamide. Have seen 30% improvement in healing of ulcers in 15 days. Have lot of difficulty eating anything.

I read a lot here about people suffering from pain. Wanted to get an idea is it the pain due to the blisters/ulcers or the side effects of the drugs e.g. join pain etc.

Regards,
Ash

Vicki,

I am doing some research on whether Homeopathy can help in this? I am in touch with few good Homeopathic doctors here in India. If I come across anything worthwhile I will share.

By the way Pephigus is not as rare in India as in the western world. Despite of that it toll six months and visit to more than 10 doctors for me to get the correct diagnoses.

Based on my initial understanding even if you try any herbs etc. you will have to remain on the steroids.

Regards,
Ash

For the mouth ulcers I tried a toothpaste and mouth wash. which I use a q tip for brushing my teeth at those time, but it's called BIOTENE. It is for people who take meds and get dry mouth and has enzymes in it. It really helped. The other thing I just got yesterday for my hands is called BURTS BEES ALMOND MILK HAND CREME. It is sort of greasy so use a little, but it isn't burning my ulcers, and it is actually helping as far as the itching is concerned. It is all natural, and I know we have all done so much talking about that. So I hope any of this may help. jane anne

Welcome Ashish..I hope you enjoy talking with us, and anything you can add to help is great, and anything we can help you with is great to. I have met some of the nicest people here. As far as the joint pain, I don't know yet if it's from the suppressant meds or the disease. I have read that it could be from the pimph cause there is mucas in our joints to and that's what is being effected, but I know being on these meds is when my joints are the worst.

told you all about waking up with very swollen eyes that were watering so bad. Well got into see my eye spec. this morn for this, and it seems that I have had blisters inside the lids, and also inside the layer of skin on the eyeball itself, and they decided to burst and are now all infected. So I am on a antibiotic and steriod eye drop that burns like heck, and have lost my driving priveledge from this..very upset, and so sick of this. Very nausase, and tired emotionaly and physically.