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Seeing Red: Linzi's Psoriasis Diagnosis Story

Updated on January 27, 2017

The Beginning

As an adult I became a very busy person and chose a rather stressful job — I became a primary school teacher. I wish it were all glitter, glue and play dough; unfortunately it's more paperwork, reports and behavior management, which can lead to high stress levels.

It was at the beginning of my teaching career that I noticed wee red spots on my skin. Just little patches under my arms and under my breasts. I assumed this was a sweat rash that got worse when I exercised, which I did regularly through one of my hobbies — dancing.

‘Seemingly Unrelated Incidents’

I put up with these patches for a few years. They just became part of my body and I was lazy enough to do very little about them.

It helped that they were in places that were rarely seen and were easily covered up. The patches were unsightly but caused me no great discomfort.

In a seemingly unrelated body incident, my scalp was covered in dry patches at the nape of my neck and behind my ears. This did irritate me and I tried lots of different shampoos and oils to treat this sudden dandruff.

Another seemingly unrelated body incident was a really sore butt crack — too much information, but I feel you need to know all the facts. It was sore like a cut and always felt like the skin at the base of my tailbone was peeling.

And weirdly, in another unrelated incident (do you notice a pattern?), the inside of my ear was so dry it would flake and sometimes bleed it was so itchy.

As pressures at work grew, so did the patches of spots on my body.

As pressures at work grew, so did the patches of spots on my body.
As pressures at work grew, so did the patches of spots on my body.

The Diagnosis Journey

The first GP I went to see diagnosed the red spots as dermatitis. I didn't mention my scalp, my bum or my ears — why would I? They were unrelated.

At this point I had already tried Googling my spots and I had self-diagnosed scabies, thrown out a lot of bedclothes and bought an expensive steam cleaner to fumigate my house.

The ointment I was prescribed made no difference so a few weeks later I went back.

The second GP I visited diagnosed me with psoriasis.

I was given stronger steroid ointments and coal tar shampoo — the red spots and flaky patches were related. Unfortunately, the small patch under my chest, which was once covered by my bra cups, was slowly traveling down my stomach and joining in the middle of my trunk.

At this point I was referred to the dermatologist as an outpatient at one of my local hospitals. This led to monthly check-ups and a lot more steroid ointments.

At one of my outpatient appointments I mentioned all my other problem areas, and for the first time I realized all these dry, spotty, raw patches — although different in appearance — were all psoriasis.

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At this point I had already tried Googling my spots and I had self-diagnosed scabies, thrown out a lot of bedclothes and bought an expensive steam cleaner to fumigate my house.
At this point I had already tried Googling my spots and I had self-diagnosed scabies, thrown out a lot of bedclothes and bought an expensive steam cleaner to fumigate my house.

Clear Skin Again!

The steroid ointments really worked their magic. My patches had all shrunk back to their original, manageable size.

Obviously I was discharged. Happy days, surely. Well, no.

This end of treatment couldn't have happened at a worse time. For a start it was the beginning of the long summer holidays so my stress levels were low.

The sun was out in Scotland. I had time to exercise and eat properly and was getting plenty of rest.

My clear skin did not last. No one mentioned that this psoriasis could come back, or the long-term, recurring nature of this beast.

So after having clear skin for a couple of months it was followed by a particularly stressful year at school, as well as buying my first house and moving out of my childhood home. This all led to my psoriasis coming back with a vengeance — red spots appeared daily and there were more patches than before.

I went back to see my GP and was put back on the steroid ointments and a new referral was made as an outpatient. Sadly this meant I was going back to the bottom of the list, which meant months of waiting to be seen at the hospital again.

My clear skin did not last. No one mentioned that this psoriasis could come back, or the long-term, recurring nature of this beast.

Time to Get Answers

As my skin got worse, I took things into my own hands and decided to pay for private medical care to get some answers.

My skin was much worse. The patches had joined up to cover my entire trunk. The skin with red spots was bright red, raw and weeping, plus lots of tiny whiteheads. My skin felt like it was on fire.

I couldn't sleep because I was too hot.
I couldn't wash with my normal products.
I couldn't wear certain clothes or materials.
I couldn't dance because it was too uncomfortable.

I didn't know whether my skin was dry and needing moisture, or if it was like a burn and needed to be kept dry. So I paid £175 for a consultation.

The doctor asked me to strip and examined all areas of my body. She confirmed these were pustular psoriasis symptoms and told me to specifically search this type of psoriasis to gain a better knowledge.

This was a little bit of a shock, as pustular psoriasis is the rarest form and can lead to serious health complications.

With the lifelong, recurrent nature of the condition this doctor referred me back to the NHS outpatient system to be seen. I was advised to stop all steroid treatment and to use only emollients for relief and to keep my skin moisturized.

Throughout the process of appointments and waiting to be seen I continued to work and try to get on with my life as best I could.

Linzi's Tips for Managing Scalp Psoriasis

Hospitalized

My first appointment back as an outpatient was at a different hospital, and led me to being hospitalized the very same day. I was examined by a nurse, who then got a dermatologist, who then made a phone call to the local 11-bed dermatology ward.

I was told to go home and pack a bag, they would phone me the minute a bed became available. I got a phone call one hour later and I was in the ward for dinner that night.

My first appointment back as an outpatient was at a different hospital, and led me to being hospitalized the very same day.

Cyclosporine

My overwhelming feeling at being hospitalized was relief. I was finally being seen and treated and secondly, I was being slathered twice a day in yellow-soft paraffin and it felt like heaven on my raw skin.

You take your skin for granted when all is well. Your skin isn't a part of you — it is you.

I had been getting on with things for so long I hadn't really noticed how bad my skin was. After stabilizing my skin and trying steroid creams and ointments, which only made my psoriasis worse, I was given the option of cyclosporine — an immune suppressant with severe side effects.

I read over the print outs I was given and talked over my limited options with my dermatologist and my family. I decided to go for it.

You take your skin for granted when all is well. Your skin isn't a part of you - it is you.
You take your skin for granted when all is well. Your skin isn't a part of you - it is you.

Endless Check-Ups

It was trial and error to get the initial dosage right at first. The dermatologist has to take lots of factors into account and regular blood and urine tests had to be done to monitor kidney function.

My skin slowly but surely cleared up. Inflammation was the first thing to calm down and the itch was majorly reduced. Eventually the redness went and all the little pustules disappeared.

I was in the ward for two weeks and was then recommended two weeks rest at home. I had weekly check-ups at the hospital, which then became fortnightly, then monthly.

I was on cyclosporine for nine months. My skin was looking much better.

On to the Next Chapter

The next chapter was then to maintain this clearer skin. Due to my age and stage in life, and my hopes to try for a family in the near future, we opted to stay away from strong medications and instead opted for coal tar treatment at home.

A runny, beige cream (which absolutely stinks) was to be applied morning and night for the foreseeable future. It took a lot of getting used to it and I never put it on in the morning, only nightly — once a day was enough thank you very much.

My skin cleared up, and by sticking to a regular exercise regime and being sensible with my food choices, my skin has had no major flares so far.

My skin cleared up, and by sticking to a regular exercise regime and being sensible with my food choices, my skin has had no major flares so far.

Getting Hitched!

I got married in October 2016 and my skin was clear!

A couple of wee red spots showed on my trunk and my bum nearer the big day, as my stress levels increased slightly, but to anyone looking at me on the day they would be none the wiser. I was just another happy bride with clear skin.

Since the wedding I haven't been as strict with exercise or being as consistent with my coal tar applications and already I can see patches creeping back. My mission is now to keep my skin from ever getting as bad as it once was. I can put up with a few wee red spots!

Written by Linzi Slamin.

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    • Mel Carriere profile image

      Mel Carriere 10 months ago from San Diego California

      Congratulations on your victory over this disease. What is really bad is when psoriasis spreads to your joints and destroys them.

      Around 2002, I think, a small patch developed on my shin, exactly where I lean against my postal vehicle. It stayed relatively stable for a while, then began to grow. Eventually, patches appeared in other places. By about 2006, they were in all parts of my body, except my face.

      I was diagnosed with psoriasis and given a steroid creme to fight it. Sometime around 2008, 2009 my left ankle swelled up horribly. One doctor diagnosed it as psoriatic arthritis, but did not treat it. If I had treated it at that point, I probably could have stopped many of its destructive effects.

      Eventually, the joint in my left index finger was permanently bent by the arthritis. That was when I more aggressively sought treatment. My rheumologist put me on methotrexate, which stopped the progress. He retired and I went to another doctor, who now has me on Stelara (ustekinumab). The Stelara has worked wonders. The pain is significantly diminished and all my skin psoriasis is gone, including the scalp psoriasis, which gave me horrible dandruff.

      I recommend that people with psoriasis and joint pain seek treatment immediately, and that they be very insistent. A lot of uniformed doctors will tell you there is no such thing as psoriatic arthritis. Those doctors should be dumped immediately.

      Great story. One I can definitely relate to.