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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Outbreak and flu symtoms

Hello all. Am wondering if anyone can shed some light on an issue for me. Am new to the whole Pemphigus thing (just diagnosed last summer and have had 3 outbreaks now, blisters on the roof of my mouth (can't eat, even water hurts) and I am sure from reading things its why I am so tired etc., however, I would really like to know if anyone else gets flu like symptoms when they get a breakout. All three times I have started with a VERY raw, swollen feeling sore throat, white spots and all, and the whole body feeling the aches and pains and tiredness and just flat out feeling icky. Within about 24 hours of that, the first blister starts on the roof of my mouth. I would like to know if this is a normal happening as I am not finding anything like it anywhere on the net, and/or is everytime I get sick am I going to get a breakout or the other way around...although, once the blister(s) get in full range and/or have popped, I no longer have the "flu" symptoms so am so very very confused!
Help please!
Thank you anyone in advance for your input.
Di

Replies

PhilP
PhilP

Hi D,

From my experience in talking to a lot of pemphigoid/pemphigus sufferers no two people are alike. When I had it, it was a continual outbreak, not something that stopped and started.

The tiredness may be from your medication, what are you on? It is probably worth your time getting your doctor to do a blood test for your haemoglobin levels.

Good luck

PhilP
deleted_user
deleted_user

Thank you for your reply. Talking with my other half, he has pointed out things that he has felt is all part of the pemphigus thing but until I acknowledged it he wasn't going to the be the one to tell me (long story, guess I dont blame him lol). But I had had continuous off the wall things, i.e. sore in my nose for months that will not go away, same on my head (thought it was from stress), etc. Bad thing is, no insurnace, the dentist, who did get a second opinion from a more experienced, senior dentist who gave the diagnosis told me repeatedly she has it on her chin and it just comes and goes and she takes meds when she has a breakout and otherwise it is no big deal. Reading from various things and learning what I can, I do not think that is my case...the no big deal thing, although I very much has the most respect and sympathy for so many I have read about as they are in such pain and lessoned life style so I consider myself lucky. I have been diagnosed with RA and also have bad hips so between it all, the RA dr. said I am destined to not have a happy future, but again, no insurance so no meds. Just the steroidal mouth wash stuff when I get the blisters in my mouth.
PhilP
PhilP

Hi D,

It is interesting that you have Pemphigoid and RA at the same time, they are both auto-immune disorders. With regard to the Pemphigoid try getting some cortisone tablets when you have an outbreak, they are much better than a steroidal mouth wash.

I don't understand the Insurance situation in the US (I'm from Australia where everybody is covered by the Federal Government) but if you can afford it try getting some Rituximab infusions which is the latest treatment for both ailments.

Good luck

PhilP
deleted_user
deleted_user

Thank you PhilP for your response. I cant argue with the pemphigus diagnosis as it has made itself rather clear but the RA, well I just dont know that I believe that diagnosis or not. Tests show a definate, but since I already have an autoimmune diagnosis and have read many places that they (especially the pemphagus) can cause false positives for different things, including RA.
I have not heard of the steroidal tabs, will look into that, and the rituximab too since I am down in Mexico and can maybe find it affordable.
Thank you for the info!
Di
deleted_user
deleted_user

Hi Dreamrider. Ilike your sceen name haha. Well the thing about it is that your liver does a lot of different stuff. Everything we drink or eat goes thought the liver and the livers job is to separate the vitamins and minerals and send them to the right place. We feel tired because the liver is not functioning right it send the wrong things to your muscle tissue so e feel like were caring another person on our backs. I use to feel like that but I am beyond that now. Your liver still has some fight in it that's why you are having different systums and they are different for everyone as we are different as a person to everyone else. You know what Im saying?? Later
Jim
deleted_user
deleted_user

Look all Im trying to say really is that yur liver is still trying to correct itself so Really that is GOOD news That's all Im saying.
deleted_user
deleted_user

I get hit both ways. If I get sick I have a break out. Or if I have a break out I feel drained.