@themick7 Welcome to Mayo Clinic Connect! Are you able to manage your Bullous pemphigoid okay? I’m sure that if you read through this discussion, you will be able to find some great tips! Is there anything specific that we can help you with?
@themick7 Welcome to Mayo Clinic Connect! Are you able to manage your Bullous pemphigoid okay? I’m sure that if you read through this discussion, you will be able to find some great tips! Is there anything specific that we can help you with?
Hello Becky,
It took my husband, myself and a dermatologist to put the massive amounts of BP's on both his legs into remission with 6 months of high dose Prednizone and off label use of Dupexient.
Now he has them wreaking havoc in his mouth. We had to leave our GENIUS Dermatologist who found the BP's but, she doe's not deal with it in mouths.
We are going to OHSU (we live in the Pacific North West, SW Washington to be specific) in
Portland. We believe we have found "our people". He is back on a high dose of Prednisone that will start to taper off in 3 months for a 4 months total. He was also started on Mycophenolat, which she says may be a life long thing.
It has been 3 weeks and nothing is better. We have an appointment soon and will address this.
My question is:
Besides the "things" we know about how to keep his immune system up during this time, ie:
Rest, Diet, Stress Reduction, No Cat Box chores, etc...
What we are really struggling with is how to navigate life.
Grocery Shopping? Get togethers with others? Telling people to keep their distance, they may be ill and not know it? Travel?
He has golfed almost everyday for over 40 years. He has golfed every day for the past 15 years and he will still golf EVERY DAY.
We want to know if any of the following things are off the table for us, (possibly for life), because soon he will have NO immune system. Am I, as his wife, restricted as well, to keep him safe?
He has resigned from being a Golf Coach in fear of being near the teens in order to keep himself well.
He has resigned from a Board that he sits on so that he will not have to attend meetings and be in a closed room with people, to keep himself well.
Are we overreacting? Are we right on the mark? What do others do? He is an active 71 and am an active 65.
I have spent time on this website reading the stories of others, somehow, these questions don't seem to be addressed in a way I am looking for.
Any advice would be greatly appreciated,
Martie V.
Assuming most of our golf is outdoors except for simulators indoors off season I see no need to quit coaching. If you are concerned in close quarters
just wear a mask. The dose for mucosal pemphigoid may decrease in time
and you may not be greatly immunosuppressed in the long run.
For senior men golf is very key for socializing once we retire.
I also have Bullous Pemphigoid. I have had it 1 1/2 years. It is mild. I got it after taking Tradjenta.
My Dematologist had me take a month if prednisone, starting at 40mg. I went off of it after a month. I was very allergic to it. I am at a year now and finally getting to normal. She had me on Imuran. Very sensitive to that. No more meds for me! I still have but again it is mild. My mouth is not good. Lots of blisters and pain
Darlene
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@themick7 Welcome to Mayo Clinic Connect! Are you able to manage your Bullous pemphigoid okay? I’m sure that if you read through this discussion, you will be able to find some great tips! Is there anything specific that we can help you with?
Hello Becky,
It took my husband, myself and a dermatologist to put the massive amounts of BP's on both his legs into remission with 6 months of high dose Prednizone and off label use of Dupexient.
Now he has them wreaking havoc in his mouth. We had to leave our GENIUS Dermatologist who found the BP's but, she doe's not deal with it in mouths.
We are going to OHSU (we live in the Pacific North West, SW Washington to be specific) in
Portland. We believe we have found "our people". He is back on a high dose of Prednisone that will start to taper off in 3 months for a 4 months total. He was also started on Mycophenolat, which she says may be a life long thing.
It has been 3 weeks and nothing is better. We have an appointment soon and will address this.
My question is:
Besides the "things" we know about how to keep his immune system up during this time, ie:
Rest, Diet, Stress Reduction, No Cat Box chores, etc...
What we are really struggling with is how to navigate life.
Grocery Shopping? Get togethers with others? Telling people to keep their distance, they may be ill and not know it? Travel?
He has golfed almost everyday for over 40 years. He has golfed every day for the past 15 years and he will still golf EVERY DAY.
We want to know if any of the following things are off the table for us, (possibly for life), because soon he will have NO immune system. Am I, as his wife, restricted as well, to keep him safe?
He has resigned from being a Golf Coach in fear of being near the teens in order to keep himself well.
He has resigned from a Board that he sits on so that he will not have to attend meetings and be in a closed room with people, to keep himself well.
Are we overreacting? Are we right on the mark? What do others do? He is an active 71 and am an active 65.
I have spent time on this website reading the stories of others, somehow, these questions don't seem to be addressed in a way I am looking for.
Any advice would be greatly appreciated,
Martie V.
Assuming most of our golf is outdoors except for simulators indoors off season I see no need to quit coaching. If you are concerned in close quarters
just wear a mask. The dose for mucosal pemphigoid may decrease in time
and you may not be greatly immunosuppressed in the long run.
For senior men golf is very key for socializing once we retire.
I also have Bullous Pemphigoid. I have had it 1 1/2 years. It is mild. I got it after taking Tradjenta.
My Dematologist had me take a month if prednisone, starting at 40mg. I went off of it after a month. I was very allergic to it. I am at a year now and finally getting to normal. She had me on Imuran. Very sensitive to that. No more meds for me! I still have but again it is mild. My mouth is not good. Lots of blisters and pain
Darlene
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