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Discussion:
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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.
Posted on 01/10/09, 05:07 pm
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Reply #1 - 01/22/09  9:56pm
" 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 "
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Reply #2 - 02/03/09  11:26pm
" 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. "
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Reply #3 - 02/06/09  5:09pm
" 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! "
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Reply #4 - 02/06/09  9:58pm
" 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. "
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Reply #5 - 02/07/09  6:19pm
" 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. "
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Reply #6 - 02/08/09  7:55am
" 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. "
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Reply #7 - 02/08/09  7:58am
" 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.. "
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Reply #8 - 02/08/09  5:48pm
" 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. "
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Reply #9 - 02/08/09  6:48pm
" 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 "
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Reply #10 - 02/09/09  9:36pm
" 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. "

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