bullous pemphigoid

By Jan8 Latest Reply 2012-02-19 06:00:43 -0600
Started 2012-02-13 09:59:55 -0600

Bullous pemphigoid is a blistering disease that can have devistating effects not only from the disease itself but from the medications designed to heal it. My first experience was a disaster for more than a year. My doc took me off all my meds.and that was a big mistake. The pain was excruciating and the withdrawal of the antidepressants was a big mistake on his part. I finally saw a specialist who told me it is autoimmune and nothing I took or did caused this. This took all of the top layer of my skin off because the blisters break and what I felt was the most intense burning and pain. My face was left intact. I should have been in a burn unit where they could have given me the correct treatment. I was put on prednisone 100mg every day and an antirejection drug called cell-cept. these drugs left me with bilateral peripheral neuopathy,osteoarthritis,however it diid grow a brand new skin. that was in 2005. Now being a new type 1 diabetic I am having a flare and have been put on prednisone 5 mgs that drives me nuts so i compromised and I am taking 2.5mgs in am and 2.5mgs in late afternoon. I have a cutivate lotion to apply to the lesions on my back,abdomen,hips,and hae had to double all insulin doseages and add a double dose of levamir in am and pm. That is 5 doses of insulin doubled. i am very scared but it does seem to be working. i would like to know if any of you have had to deal with anything like this.

19 replies

Jan8 2012-02-17 11:10:03 -0600 Report

I have found the most wonderful dermatologist. She has saved me from lots of pain and suffering.

Graylin Bee
Graylin Bee 2012-02-17 20:50:40 -0600 Report

That's great. You have had enough for several lifetimes already.

Caroltoo 2012-02-18 19:34:18 -0600 Report

I'm still amazed at the name: bulious pemphigold. Sounds like a monster out of a bad fairy tale!

Jan8 2012-02-19 06:00:43 -0600 Report

lol caroltoo, I know,I couldn't even say the word because I hated it so much. Iit's the ugliest word I know and If the darn disease gets out of contriol, it fits it's name. Sounds like a troll under a bridge or the name that " Shall not be spoken" from Harry Potter.
Arggghhhh Jay, I use to be scared to death of that thing. VEEEry Funny!

Graylin Bee
Graylin Bee 2012-02-13 19:33:29 -0600 Report

Never had to deal with what you did. I only had to regrow my skin on both legs from just below the knee to the ankle. That hurt enough, I cannot begin to imagine the pain you endured. While I was regrowing my skin I was being giving insulin, but I am T2. Once I was healed my BG improved. But the pain and meds sure messed with my BG during the healing process.
Hopefull, since the lotion has stopped the spread, there is a slight decrease in your stress level. I remember the panic I felt when I fell and scraped the new skin off a part of my shin, that sent my BG up a bit.
You beat it back before, you'll win the battle again.

Nova69 2012-02-13 13:14:38 -0600 Report

Hi Jan,

That sounds like a really debilitating condition. I'd be severely depressed if I had to live with that. It causes pain, worsens your diabetes, attacks your self-image - no wonder it can cause depression.

Prednisone can sometimes be worse than the disease it's supposed to treat but I think that in this case, it may be all you can do. I did a little research and read that, in some cases, topical corticosteriods can be substituted for all or part of the oral ones (prednisone).

Whatever happens, try to persevere - everything I read says that this will disappear eventually - small comfort now, but at least a little ray of hope.

We're all behind you, so do your best to hang on. Good luck.

Jan8 2012-02-13 13:21:15 -0600 Report

Thank you so much Nova69. In the past I have used clobetasol ointment and it worked but this time there was no stopping the itching and pain so after 4 days of beanadryling myself to death i finally went to the derm doc. she has me on a more moisturing cotisone lotion and so far it's working well to my surprise. No more spread or itch Thank God! You are a ray of hope and I thank you for your reassuring words. I am going to win this battle with the prednisone messing with my metabolism.

jayabee52 2012-02-13 12:20:59 -0600 Report

I am sorry to learn of this, Jan. I have heard of it but have not seen it or heard of someone's experiences with it.

The meds you mentioned, cell-cept and prednisone are familiar to me as my late bride "Jem" had taken those (among many other) meds.

What she was battling was Lupis (systemic Lupis Erithamosis — or "SLE") and Rhumatoid Arthritis (RA) The cell-cept wasn't effective against those two very painful "medical challenges" so she was left with either a cortisone injection or prednisone pills. Both of them spiked her BG levels to over 300 (she had several readings where the meter could not read — it just said "HI")

Since jem was totallly blind I had to take her BG readings and draw up her insulins. Her diabetes care was handed over to a endo (from the diabetes nurse at her heart clinic) and we were given 3 different insulins (novolog NPH, Novolog "R" {fast acting} and Novolin "Aspart" {ultra fast acting} ) and 2 different sliding scales to follow for 2 of the insulins.

So even though it was not a part of my self-care the horror of the ultra high BGs from the steroids had been a part of my life with Jem.

Jan8 2012-02-13 13:14:27 -0600 Report

I am so very sorry jayabee52. it was a noble act taking care Jem. It's so hard when the person you love is ill. I had a reading of 40 @ 11:30 am today. I thought okay I'm not lying on my face yet so I took 3 glucose tabs,drank coffe with cream and 1/2 PB J sandwich.It worked. I am healing nicely but I do hate any type of steroid. There's a book that was recommended to me " Think like a pancreas" Well I guess my pancreas doesn't think like the author's. His calculations do not go with my body. I think because i am very thin it's a different story. Anyway, Jay, I am sorry if I reminded you of a very difficult time in your life and you can be so very proud of yourself for the love you had and gave to her. That's something that many people never get in their lives.

jayabee52 2012-02-13 18:57:12 -0600 Report

I WAS a fortunate man in that we got to share a few months of our lives together before she passed. It was more than worth it because she was an exceptional person. I didn't then nor do I now think that this was a difficult time in my life. I remember it as a point of reference or a point of empathy because I had gone through something similar. No apologies necessary.

Now I have trouble with ladies with whom I have tried to develop a relationship because according to some I remember Jem so very fondly and I do it too much. They're feeling intimidated by me remembering her so fondly.

I am indeed very fortunate to be a part of her life. I am told by some of her long time friends that I made her life a joy by coming into it. You are right many people never get that in their lives.

Jan8 2012-02-14 05:53:27 -0600 Report

I think that your remembering Jem so fondly is an attribute and if the ladies can't pick up on that you don't need that kind of lady. If you find that you are doing it too much, just turn your focus to a woman who deserves the kind of joy you had given to Jem. She sounds like one of the real Gems in your life . I once knew a man like you . I lived across the street from him and I use to see him pick her up and dance in the living room with him. I use to pretty her up,do her nails,hair,makeup. As a nurse I have seen many fortunate men like you jay. Many wonderful people who were fortunate to be loved as you are. Thank you for sharing a very inspiring moment of your life.

jayabee52 2012-02-14 14:15:22 -0600 Report

I keep praying that I find one a little bit like her. I believe God has her in store for me, but waiting for her is the pits! I keep praying that I will be ready for her when she comes into my life and that she'll be ready for me.

From the discussions I had with Jem over our courtship and marriage I think that had we met earlier, neither of us would have been ready for the other. We had to be seasoned by life experiences before it would have worked well. I know I wanted children, and from what Jem told me of her 20s she would not have been able to give me any, (except perhaps by adoption). And my marriage to my sons' mother for 25 yrs seasoned me well to appreciate more about Jem and her personality and gifts.

jayabee52 2012-02-14 14:57:46 -0600 Report

jem came into my life the same way. Whan I least expected it.

In fact I had been trying on dating websites to conjure up a lady friend, but I decided to take a break for a while cause I was getting frustrated.

And from the dating site that I had kinda had ignored for a while (but still had a profile up), Dating4Disabled Jem sent an email. It seems she had been convinced by her friends to give it a try. Her friend Lori volunteered to look at the profiles and send those she thought Jem might find interesting. I was one of the profiles Lori sent Jem. When Jem asked Lori why she picked my profile Lori said "he has kind eyes". When Jem protested that "he's from Las Vegas, I don't want a long distance relationship" (there was some 500+ miles between us) Lori replied "Well you don't have to MARRY him just be a friend" (we all laughed with Lori about that at our wedding).

I am crying bittersweet tears right now tears sorrow that she's gone from my life but also tears of joy that we were IN each other's lives at the right time.

I will have to stop replying to this thread or I will probably totally break down.

But thank you for the opportunity for such a fond rememberance of Jem on this Valentines day.

Jan8 2012-02-14 15:58:54 -0600 Report

OMG Jay! Now look what I did!! damn it! No Do Not I repeat do not reply! Go do something fun. I quit too.Sorry!

jayabee52 2012-02-18 19:36:08 -0600 Report

No need to be sorry Jan breaking down in tears can often be a good thing. and I truly meant the thanks for the opportunity to remember Jem so fondly on VDay.

Well Jan, now a bit of an update. I had received a message on D4D from another lady, SuzyQ, about a week or so ago. I told her about my "medical challenges" and she didn't respond for about 5 days. She just responded today (2/18) and gave me her phone #. She wanted to talk because she was afraid that I might not like her speech impediment (she has cerebal palsy). I wrote her with my cell number and told her that I was planning to call her Sun. afternoon. She is from Milwaukee WI but said in her initial message that she had been considering a move from there to Las Vegas (where I am). She sounds quite promising!

Will have to continue down the path with her to see if anything interesting develops. So far there have been no "deal breakers" for either of us.

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