Tiffany. It is usually a derm. that treats the disease. I would schedule an appoint me with one because this disease is a skin disease.

I have an appt. with a derm but I can't get in to her until Oct. 21st!!!!! That's a long wait!! Is that typical?? Until then am I just suppose to deal wth it??

Tiff It took me a year before I found the right doctor. The prednisone did help and that is what my doctor put me on and on cellcept. Another doctor pushed me through to the doctor I have. If it had not been for this doctor I probably would be still waiting to get in at Emory.

I hope everyone is doing okay. I am much better.

i was on 50mg prednisone for a little while, then 40mg for a month. Then, I was on 20mg for 2 weeks. I had some more blistering. Then,I saw a dermatologist last month. She tapered me down to 5mg of prednisone, I put triamisolone ointment on the wounds also. I did this for a month. I had sores in my mouth until a week ago. I saw my Dermatologist again today and he kept me on everything but is prescribing 1000mg Cellcept 1X day for two weeks then increasing it to 2X a day for two weeks then I go to see him. He performed a lot of blood work tp try to get a more definitive diagnosis. I have had pemphigus since 2001, butt was diagnosed until recently. Has anyone had side effects to Cellcept?

christina in tn

Cellcept caused me to have problems with my vision, short term memory loss, and an inability to walk for several days.

I developed phemphogoid after having a baby. I started on 40 mg and now 20 of prednisone . My dr. Has also added dapsone ... 3 pills a day. I still am getting it in my mouth, but have stopped blistering on my hands and body.

Hi Kellbell,

Sorry to see that you've developed Pemphiogoid. My experiences with dapsone and predisone are as follows.

A few quick points;
Sustained use of Predniscelone (or cortisone) can cause stomach upsets so it needs to be taken with some form of acid reduction medicine.

It will supress the symptons but will not cure the disorder. Regretably there is no cure for this problem as it is a auto- immune disorder - that is the body's own immune system is attacking the body. At this stage medical science does not know what initiates this immune response. You should also be taking a calcium supplement and a vitamin D supplement. (Cortisone leaches calcium from the bones, vitamin D helps the body absorb the calcium.)

Dapsone is the standard initial treatment for Pemphigoid but like all drugs can have side effects. In particular you may find your red blood cell count drops away so you will need an iron supplement. Your doctor can advise you on this matter. Related to this you may begin to feel very tired.

I strongly suggest you obtain some advice from a dermatologist. preferably one who has a good knowledge of this disorder - it is almost a sub specialty of dermatology.

You should also have a consultation with an opthamolgist as pemphigoid can migrate to the eyes with serious effects. It can also migrate to the larynx, as it did with me.

The good news is that Pemphiogoid can now be treated by a drug called "Mabthera" which you receive by infusion. I had become very ill with my pemphigoid but the mabthera put it into remission.

The important thing is to get a doctor who undertstands the disorder and treat you accordingly.

Hope this helps

Regards

PhilP

My Mom has pemphigus and she takes prednisone to manage her breakouts it works but it has turned her into a insulin dependent diabetic because the prednisone raises her blood sugar. Has this happened to any of you?

I am now off prednisone completely after taking it for 9 months. I havent had any breakouts in 2 months!!!! I am however starting to lose massive amounts of hair. My dr. Said this is normal after the prednisone but I am starting to worry. Has this happened to anyone?

They started me out in 2009 on 120mg of prednisone and 150 of imuran. then tapered me down on the prednisone and pulled me off of the imuran after becoming diabetic and my white blood cells started mutating and had me on the verge of leukemia. I had lactic acidosis throughout my body. I ended up in Medical ICU from acute adrenal distress. I have to say. that got me in remission for about 5 months. Now I have a new doctor and I do the taper of prednisone starting at 60mg. and I take 100mg of Dapsone daily. I start over every month and a half when I see my doc. Still broke out on head, neck, shoulders, chest, stomach, back, mouth and throat. Even on the predinsone I have lost about 80lbs due to not being able to eat much and tooth sensitivity from the prednisone.