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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just got the test results

I have just been diagnosed with Pemphigus. I don't know what to expect. I see my doctor on Friday for the first time. I am always tired. Is this a symptom of the disease? I also have a hard time sleeping. Let me know what I can expect.

Replies

deleted_user
deleted_user

ypu can expect to be tired and depressed. this disease is very rare and time consuming. even some good dermatolagists dont know what to tell you or how to help you, but good news your not alone. good luck to you
deleted_user
deleted_user

I was just recently diagnosed to, and I have found it very helpful to be on here, and ask lots of questions. It seems to me that alot of times the docs don't know what to do or say, and on here I have more support, and answers to into the docs office with. I am tired all the time, and in lots of pain. I wish I could tell you Everything that I go threw but the list seems to never end. Good luck, and don't give up.
deleted_user
deleted_user

I was diagnosed in August and I didn't know what to expect either, at first they told me hey it'll go away in six months and I hung my hopes a little too high on that. It is very exhausting and painful and oftentimes depressing but you can make it through it, good luck!
deleted_user
deleted_user

Are you working? I told my doctor I was very tired all of the time. He told me it was not related to the pemphigus. I feel like I too tired to work some days but go in anyway. I am on doxycycline 200mg per day. It doesn't work as well as steroid that I was on. I don't really know what to expect.
deleted_user
deleted_user

I think it might have something to do with all the medications used to treat it 'cause i'm definately always exhausted! I can sleep a day away and still be tired. I was working originally I admire that you still are, I was just tired and hurting to go, I took some time off because originally they thought it was chicken pox and I didn't want to spread it, through all the treatments and hospitals and doctors I lost my job though for being off so long. Maybe when i'm stabilized I'll try again.
deleted_user
deleted_user

I am also wondering if it's the meds that make us so tired. And I have to say that the meds are butt kicking. So many side effects, and I give you so much credit for working. I can't the pain is way to much. I have so much great pain in the joints, and I wanted to tell you all that cause I don't know if it's the meds again, or if it's the disease. Hang in there..the depression gets bad sometimes to. Have a good support group or even just one person to talk to.
deleted_user
deleted_user

I just have to say when they told you it would go away in 6months didn't you feel you had a chance to not live like this, and they just blow that out of the water. I have found a man who was diag with this, and he is on some med that i don't think is listed here. I am going to call him and see what he has to say cause I guess he has his under "control" for the past year, and then I will let you all know what I find out..
deleted_user
deleted_user

Yeah sometimes it's really hard to tell what's from the disease and what's from the meds, I hope in the future they'll have a better way of treating this. It was really crushing when I found out it wasn't just an allergic reaction and I might just have to live with it a couple years or all my life, I think that's when the depression hit the worst... please do let us know what you find out.
deleted_user
deleted_user

I will let you know what I do find out. I find that I get the most anxiety, and depresion when the day is coming to an end, and I have nothing else to like clean and the boys are in bed. See, I have done so many biopsies, and blood work, and finding out that the derm did the wrong blood work, they don't really know what meds to put me on. I may have the worst pemph. cause I have a tumor already in my brain..so I am really freaking out to get the results, yet my faith is telling me that I already know I have the pem anyway, so why sweat it now, it can't be cured. I hate asking for pain meds though. They worry about addiction, yet WE sit here in all this pain. Anyway you have a great night, and I will chat with you all later. God bless...jane anne
deleted_user
deleted_user

I am being treated with doxycycline. It is not working. The blisters are getting worse not better. I call the doctor today. I am just waiting to hear. I keep pushing to have a normal life. By the end of the day, I am too tired to much besides go to bed.
deleted_user
deleted_user

I just wanted to say that I am sorry for the way you are feeling. I am sitting here feeling the same way. I totally understand the tired, but not sleeping thing. I hope you get some answers soon that will help...
deleted_user
deleted_user

I wake up several times during the night. I am so tried that I don't get up. I usually fall back to sleep. I too am sorry that you have to go through this. I really am glad again that have you all to talk to.
deleted_user
deleted_user

I know how you feel. I wake up like that everynight. Last night I was up and down constantly. So I decided to get groceries around 5am, and bake even though I need to take my pain meds before I get up and get moving. You know what I did today for myself, and I don't know if that's why I ended up sleeping all day, but I colored my hair and did my nails. I just tried to relax and finally slept. I am sure I will be up again tonight though. The doc isn't telling me what to do about the muscle cramps, and I don't know how much more I can take of them.
Hope you get some kind of sleep tonight, and I am so very happy to talk to you anytime.
jane anne
deleted_user
deleted_user

Vicki I just thought of something I also do. I put on my headphones, and listen to music that fits my mood, I try not to get all that sad stuff, and sometimes I really need that stuff to just sing out loud and cry. So maybe try listening to music. I don't know, but it never hurts to try..
deleted_user
deleted_user

A normal life... sadly I almost forget what that's like. Same here I just had a very bad flare up and had to go back to 100 mg prednisone, but we are hoping for the Imuran to kick in. Always so tired, I sleep entirely too much as it's such a pain to move around. Healing up is such a slow process..