My struggle with Pemphigus

By Natasha, Pemphigus vulgaris, United Kingdom, December 23, 2019

In April 2017 I started getting 'ulcers' in my mouth that just wouldn't go! I visited the dr who said there was nothing they could do just deal with it! (lovely) After another 3 months I went back and was sent for blood tests for anemia and various deficiencies, all came back fine, so was told that it was probably stress.

I carried on for another 3/4 months to which they would come and go. It wasn't until I went to my dentist for advice was anything taken seriously I was referred to a specialist but the appointment wasn't until November. This is where things took a turn for the worse by the October I had started developing red spots in my back, the drs said it was an allergy. After a couple more weeks the so called spots had spread over my stomach and back and had turned into weeping blisters. Back to the dr I was told it was chicken pox and given anti viral drugs and cream, they continued to spread onto my legs, shoulders, arms etc. Another visit to the dr this time its shingles, after another few weeks it was only getting worse. I finally saw a dr who could see something wasn't right and referred me straight to the hospital and also took photos to send. 

That afternoon the hospital rang as they wanted to see me urgently so I was booked in for the friday of that week, 2 days after my appointment with the maxofacial team.  The maxo team mentioned they thought it could be something called pemphigus and booked in a biopsy. That Friday I met with the dermatology team and was whisked straight into a room. The dr and consultant chatted and looked at my now oozing blisters that covered 90% of body by this point, they too were convinced it was pemphigus vulgaris something I had never heard of before that week. I was sent for a biopsy the same day. After being given a ton of medication from steroids to immunosuppressants I was starting to feel better. 2 weeks later I had my official diagnosis of pemphigus vulgaris and was started on mycophenolate and prednisone which seemed to do the trick.

However this was not the end, 2 years later I'm still suffering as the medication didn't work and had to start a new dose of Azathioprine, prednisone and doxycycline. Luckily they have started working and I can finally see light at the end of the tunnel but being on long term steroids is not fun as it causes mood swings and weight gain which just adds to your misery.

I'm hoping now that the new medication is working that I can finally say I'm winning the battle. 

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