A Journey With Pemphigus

22 Mar

It was September 2014 when I woke up one day and noticed a deep type cut on my lower back, it was so odd I remembered showing close friends who thought it was very odd. I thought I must have cut myself somehow or scraped it and not realised. However as time went on I kept noticing more of these lesions, mainly over my back appearing, I would feel my skin disappeared as I rubbed an irritation on my back, this soon spread to my front. I had no idea what it could be, I had never seen anything like it. I was googling and nothing was coming up with my symptoms.

Eventually I decided to see my GP to try and find out what was going on. My GP first thought it was a staph infection and prescribed lots of different creams yet nothing worked. I went back time and time again and got different treatments but again nothing was working. By this point I was covered in burn type wounds all over my torso front and back. I was beginning to worry that something serious was going on. After spending a lot of money on various prescriptions, the GP decided to do some swabs. Unfortunately with a new system in place at my local hospital, two lots of swabs went missing. Unable to cope much longer I decided to get a private appointment just to find out what was happening. I was seen by a lovely Dermatologist who first introduced me to a word I had never heard ‘Pemphigus’. She was certain this is what I had and said I needed to be seen urgently for a diagnosis.

I want to take a break just there in my story and introduce you all to Pemphigus. Here is what this strange word to many means:

Pemphigus is a rare autoimmune disease that causes blistering of the skin. The blisters have thin roofs and break easily to leave raw areas (erosions) that can be extensive and painful. Pemphigus does not go away by itself, and always needs treatment by a specialist.

The skin:

  • The skin lesions start as thin-walled blisters (collections of clear fluid within the skin), arising on a background of normal-looking skin. Because they are so fragile, pemphigus blisters break very easily, leaving raw areas known as erosions. 

  • Erosions are areas of skin (or mucous membrane), which lack its top (outer) layer. They look raw and feel sore – like a burn. Erosions can join together to create larger areas of raw skin that look as if the top layer has been scraped off. 

  • Erosions can become crusty and scabbed. When they heal, those on the skin may leave discoloured marks. 

I was told only 1 in 300,000 suffer from this rare disease. I thought how on earth had i ended up with this. It is still unknown as to why people suffer with this disease.

It was January 2015 8 weeks after seeing a private consultant i finally saw an NHS Dermatologist. Although i had waited a long time I could not fault this team. Less than a week later i had the well needed biopsy to determine the diagnosis and this is unfortunately what the results showed. When doing biopsies for this condition, Dermatologists quite like a whole blister, but because blisters that form are so fragile, they very quickly turn into a wound. It was only after my diagnosis i actually fully researched a lot about what pemphigus meant. I have always been a very well so it was a bit of a shock. I was under attack from my own body.

In order to gain control i needed my immune system to be suppressed to stop it from attacking itself. I was started on a very high dose of 75mg of steroids. This was tough, not only was i dealing with the diagnosis, my wounds which by this point had spread to my face, arms, legs and scalp, i was dealing with the psychological affect of how much weight the steroids made me gain. My face bloated hugely into what is called a ‘moon face’. I ended up feeling horrid. I was then started on other meds alongside the steroids. Unforunately the first set made me violently ill. I was starting to find the treatment aspect a lot worse than being covered in blisters. I felt tired, emotional, sick, and many other side effects from these drugs. I then one day found a blister on my ankle which i wanted to cover because it was scared of it rubbing so i put a plaster over it to protect it. It was one evening at home i decided to take the plaster off, as i ripped the plaster off it peel a huge chunk of skin off my ankle, the pain was indescribable, i had never felt anything so horrendous. I look down just to see a whole strip of skin hanging off the plaster. I could barely walk and had to have it bandaged for more than 3 weeks, including a trip to A&E for IV antibiotics.


I was then started on a new drug called Mycophenolate, this is normally used on transplant patients to lower their immunity before having a new organ. It was increased every couple of weeks and i soon started to get headaches, numbness, tingling and very little sleep. I have never suffered insomnia and i never want to again. I went days without sleep, it didn’t matter what i tried i was wide awake and mentally i was starting to suffer. I became a shell of who i was, the steroids altered my mood, i felt at war with my own body. Someone suggested lowering them again and trying again but extremely slowly to increase so my body had more time. Thankfully this worked and I have now been on this drug over a year.

After much of my life being spent at hospital in 2015 for various appointments, scans and other tests i am pleased to say that March 2016 feels positive. I have no more wounds, apart from the occasional blister and my scars are healing well. I am now off steroids after around 16 months, losing weight and the other drug is taking over. Pemphigus is not a curable disease, i can go into remission and it could last my whole life or i could relapse at anytime but hopefully i will never be as bad as i was. I have joined some social network groups supported by the pemphigus foundation. Sadly most sufferers live in America and a few in the UK but the support group has been invaluable. Picking eachother up and encouraging one another when we feel the battle is too hard to face. I have met some amazing people in the care working team, from Dermatologists and Nurses etc who all made my journey a little lighter as well as my amazing family and close friends who stood by me every step of the way.

This has been an interesting journey, not one i would have necessarily wanted to have faced but it is funny how life directs you and changes you through the tough times. My journey isn’t over it is a continuing one but I know one thing and that is that Pemphigus cannot beat me!!!

Steroid reductions

5 Responses to “A Journey With Pemphigus”

  1. Sylvia Jordan July 6, 2016 at 10:00 pm #

    Well done Sarah, in every way! When I was diagnosed with Fuchs endothelial dystrophy, I got most of the information from the Internet and the support group which was also mainly in the states. In the end I knew more about the condition than most of the specialists I was seeing and was able to take control of my own treatment. If I hadn’t learned so much I would have been completely blind by 2010 ish. I volunteered myself for an operation which was just being done in the states and which a Dr at Moorfields had just learned how to do . It’s now a regular op for the condition.

  2. Anne December 2, 2016 at 2:49 pm #

    Thank You for sharing your story. I am covered with blisters all over my back scalp chest face and arms and I am just starting prednisone and waiting for biopsy result so They can start me with immunosuppresants. Hope all is well with you

  3. Anne December 2, 2016 at 2:53 pm #

    Sarah is there anyway to contact you?

  4. Anne December 2, 2016 at 2:53 pm #

    Sarah, Is there anyway to contact you?

    • sairyd December 2, 2016 at 4:47 pm #

      Hi Anne.

      Sure you can email me at sezmicuk@yahoo.co.uk

      Happy to give advice or help best I can. So sorry for what you are going through. It’s a horrible disease and starting treatment is horrible. Trust me it will get better. I’m still immunosuppresed. Took a long time to come off steroids. Hospital are hoping to start tapering my mycophenolate early next year.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: