I was diagnosed by biopsy with Bullous Pemphigoid just over a year ago. In that time my lifestyle has changed enormously. I have gone from being active with plenty of energy to becoming a couch potato.
It is difficult to know what the cause is, I question whether it is the disease or the medication. The medication has worked well in terms of reducing dramatically the blisters and terrible itch I started on 50 mgs of prednisolone and I am now on 4 mgs, but I am finding it so difficult of reduce further I also take 15mgs of methotrexate weekly.
My day consists of finding the energy to get dressed and even small amounts of housework or cooking are a challenge.
I have had the Covid immunisations but a blood test has shown that I have no immunity against Covid-19. The reduction of Covid restrictions scares me and I avoid places where people congregate and meet, making life very lonely and devoid of previously enjoyable social occasions.
My only son, daughter-in-law and grandchildren live in Scotland and I can no longer make frequent visits to enjoy them.
I have been fortunate in that my consultant has been excellent and I can contact her when my heath deteriorates as it has done several times in the past year.
Finding PEM Friends has been a life saver for me, I felt so alone after diagnosis and although I had worked in the health service for 40 years I had never heard of Bullous Pemphigoid. The weekly Zoom meetings give me the opportunity to chat to folk who are so warm, welcoming and much more knowledgeable than me.
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