About May 19, 2007
I’m a thirtysomething woman with pemphigus foliaceus - an auto-immune disorder. My treatment involves filling me full of prescription drugs with nasty side-effects. I’m trying to live a healthier and more natural life in the hope of easing my symptoms and reducing the number of ‘unnatural’ chemicals in my body and environment.
Hi there. Read one of your blogs today and wanted to see if you are aware of our organization. We host a discussion forum on our site as well as an email discussion group. Sadly we do not have a Support Group in Scotland, but we do have two in the UK - one of which is hosting a weekend gathering at the end of this month.
If you have questions feel free to call or emial us.
Thank you
Will
International Pemphigus and Pemphigoid Foundation
will@pemphigus.org
info@pemphigus.org | http://www.pemphigus.org
Will, I am a member of both the email group and the forum and have found both to be fantastic! The IPPF has been an absolute godsend in helping me through this first year living with pemphigus.
Thank you for the kind words. The efforts of Janet have helped many patients from around the world and it is a privlidge to work with her.
Again, if you have questions, just contact us! Best of luck!
Will
Hi,
I read some of your blog, came across it in my never ending search for new developments with PF. I also have it,41 female Canada. Question did you get the chicken Pox at a late age?
Tracy ☺
Hi Tracy,
I’ve never actually had chickenpox. When I developed blisters last summer my initial diagnosis was chickenpox … but it turned out to be PF. I now dread the thought of getting chickenpox!
Are you a member of the IPPF email discussion group? If you’re not, then you should think about joining. There are a fair few people with PF on there. It’s been a great help to me.
Hi,
I was a member when first diagnosed but didn’t like it..too many opinions. I am lucky enought to have the most wonderful Doctor who I email in between visits she promptly answers all my silly questions. She is the only person in all of Canada who specializes in the disease, she’s only a two hours from me. I asked about the chicken pox as my Dr. mentioned to me that many people with pemphigus actually didn’t have or get chicken pox at a late age.It’s our incredibly strong immune system that overly protects us from something that 95% of the population contracts befor ethe age of 10. Me, I was 30!. It’s this same overly protective system that is a pain now, I can’t seem to shake PF. Although, all my lesions dissapeared very quickly after starting Prednisone( 1 and a half months) then I started cellcept( have you heard of it yet? It’s the pemphigus wonderdrug as it’s steroid sparing… no icky side effects). Unfortunately, i decided to stop the cellcept thinking it was gone…. not…. so now I’m using Clobatesol cream and perhaps might start the cell cept again.
Tracy
Your doctor sounds wonderful - I wish mine were half as helpful!
I think that what your doctor said about our strong immune systems sounds absolutely right. I managed to avoid all the usual childhood illnesses, and I had psoriasis (another sign over an over-active immune system).
I’m currently on 15mg Pred and 2g Cellcept. I’ve been on both drugs since September - I started on the Cellcept about a week after starting on the Prednisolone. I keep getting flare ups, so can’t get the Pred any lower (yet!).
By the way, have you had PF for long?
It appeared in February 2006, startd with flaking on the side of my nose,then progressed to blisters on my head, chest, back and armpits, I had about 60 in total. I wasn’t actually diagnosed with PF until May/ 06. Started Prednisone (40 mg) in June, decreased to 30 then 25..20..15..10 strted the cellcept in October at 2000mg,I was at 25 mg prednisone at the time. All the pemphigus cleared up within a month or 2 of starting the Prednisone but I was at 40 and 30 mg. Prednisone was so nasty though, I gained lots of weight and my face loked like a cabbage patch doll.