Pemphigus Support Group

Pemphigus is an autoimmune disorder that causes blistering and raw sores on skin and mucous membranes. As with other autoimmune disorders, it is caused when the body's defenses mistake its own tissues as foreign, and attack the cells. There are three types of pemphigus which vary in severity: pemphigus vulgaris, pemphigus foliaceus, and paraneoplastic pemphigus.

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Hey everyone

Recently I've been trying to find a good support group for pemphigus in my area but since it's so rare it's been hard to find one. So I was really happy to finally locate this forum, it's really weird trying to explain it to other people but I can understand since I never heard of it before now. It's nice to know I'm not alone battling this thing though.

Replies

deleted_user
deleted_user

I just found out New Year Eve. I have been looking for someone who can share my experience with. I am on doxycycline 200mg a day. I am in pain everyday. I can't tell you how tired I get. How are you coping with this?
deleted_user
deleted_user

same here, I'm always exhausted. I'm on 60 mg prednisone and 150 mg Imuran, just went through a couple months of cellcept without it helping at all. It's really hard with the pain, I find mornings to be my worst lately I've been really frustrated and depressed as I just started college around the time I was diagnosed, it's really been a struggle but I keep pushing myself.
deleted_user
deleted_user

I am in the same boat as you both. I have three boys that are my life, and they keep asking mom what do you really have, well, it's hard to explain it to an adult let alone a child. And I don't even really get it. Even though I have read so much that I can explain it. But do I get it? NO. The pain is so severe that I keep cleaning and getting up as much as possible. People keep telling me to just lay down, and they don't get that you just can't lay down all the time, and sometimes it causes more pain to lay there. When I am running around the house, it takes it off my mind for just that second. When the pain gets so bad I get into an anxiety attack. Do you get that? I try to relax the anxiety out, but yeah that really works. I just found this site to, and am so Happy to have found it. Makes me know I am NOT alone anymore. I do ramble a bit so just bare with me somedays. lol..God Bless you all
deleted_user
deleted_user

lol please ramble all you need to! it's good to let it out sometimes. I understand about the kid thing too, it's hard to try and explain it to them. So far they're the bluntest and ask what's that on your face? I try to explain it best as I can. It's also hard with the laying down I'd rather be in pain and moving sometimes. I also go into anxiety type things when the pain gets really bad it just makes me snap when I can't tolerate it anymore, usually someone will have to talk me into calming back down again. I really do miss cooking, I just don't have the energy for it anymore.
deleted_user
deleted_user

Before I knew what was wrong I thought maybe all of this was just in my mind. I couldn't get over the fact that I was always tired. I would wake up tired and lie down tired. I am known to have lots of energy. I have to make myself get out of bed these days. I go to work later now. I have a job that I don't have to go directly into the office. I can be in out. I sometimes come home early. I have managed to get everything done that I need to at work. I am so glad you all responded because I didn't think I had anyone who would understand this.
deleted_user
deleted_user

I've always been a rather hyper bouncy person myself, now it takes a couple of people to convince me, pull me, talk me out of bed in the mornings. It is good to find so many other people out there fighting it too and knowing I'm not alone. I only heard of one other person here having it in passing while I was in the hospital recently they said another lady had been there with it a couple years ago.
deleted_user
deleted_user

Becstorm I hope you are feeling better today. I was up exercising this morning before work. Exercising seems to give a burst of energy.
deleted_user
deleted_user

That's good, now I know I've been sick too long as I really really WANT to be able to exercise. I can barely walk now but as things heal up I'm going to try and exercise more. Definitely gonna take better care of myself when I can.
deleted_user
deleted_user

I just found out that there was a group that can help me with my eyes i cant see when the sun is very hot and that make me not study when the sun is hot i will hope that u help me out
deleted_user
deleted_user

Welcome "ging" . My vision is affected by the Imuran that I take. I have read that once I am off of it, It will get better. What did your doctor say?
deleted_user
deleted_user

I just found out that I have this disease. I started with a spot on my chest and now it's on my lips. I have very little energy and am in alot of pain. Is there anyone that can help me with what I can put on my lips for the pain as of now i am taking predisone. Thanks
deleted_user
deleted_user

What can I say ..... The low energy is going to be there. I go to work every day and fight this as much as I can. I am usually in the bed very early because I am so tired. I am in a lot a pain. I am on predisone and Imuran. The imuran has increased my pain. On Sunday I was not able to walk due to the severe pain in the back area. I do take tylenol. Usually 3 at a time of extra strength. That seems to help some.