First visit to Newcastle RVI

Back from my hospital visit and it all went well.  I was concerned that I was going to a Severe Psoriasis clinic, as I don’t have Psoriasis, but they also deal with other conditions and the consultant who saw me (I think he was called Dr Phil Hampton) did seem to know about PRP.  I had more blood tests, I was prescribed more methotrexate and I’ve got another appointment there in six weeks’ time.  All good. 

The first person I saw today was a nurse who had to check various parts of my skin, so I had to strip to my underwear.  She then gave me one of those classy hospital gowns to wear while waiting for the consultant, as I was putting it on she told me how highly the hospital treated patient modesty/dignity. Just then the door onto a busyish corridor opened as another nurse walked in and said ‘sorry I thought this room was free’. It kind of ruined the whole patient modesty/dignity speech ;-) 

The story so far...

In preparation for tomorrow's visit to the hospital I have prepared a timeline of my story so far ( See below). Slightly worried about tomorrow since i found out I am not seeing a specific dermatologist, instead I am going to a psoriasis clinic and will see whoever is there at the time.  Will they understand i don't have psoriasis?  Will they know about PRP? Anyway here is my update

• February 2015
  Initial symptoms; red spots under armpits moving onto chest
• March 2015
  Light red ‘sunburn’ rash across body with dark red spots
  Skin peeling on palms and arms. Skin on face scaley/powery
  Scalp itchy and flakey. Silvery patches
  Whole body itchy leading to lack of sleep
• 31 March 2015
  initial dermatologist visit & PRP Diagnosis
  Treatment: Hydroxyzine. antihistamine to help sleep
• April 2015
  First noticed my body has completely stopped sweating
  ‘Field of flakes’ across arms
  Skin peeling on soles of feet
  Constant itchiness  & lack of sleep unbarable
  Treatment: daily hospital applications of emollients, Neotigason, UVB treatment & Hypnotherapy to help sleeping
• May 2015
  Shedding all over
  Difficult maintaining temperature- Feels cold when others are warm
  Swollen feet and ankles
  Skin very red/bright pinky Skin around eyes very tight, pulling my eyelids down.  Eyes very dry
  Very tired
  Treatment: UVB stopped. Neotigason reduced.  Neoral started
• June 2015
  No Change
• July 2015
  Some island of sparing on torso, developing into a clear patch
  Very scaley face, scalp, arms, legs
  Sudden drops in energy levels
• August 2015
  Daily hospital emollient treatment stops
  The clear patch of skin has gone.  Red all over again
  Splinter hemorrhages on fingernails
  Treatment:  6 x 2.5 mg of Methotrexate once a week, 5mg of Folic Acid 6 days a week,  20mg of Neotigason (acitretin) once a day
• September 2015
  Several islands of sparing start to appear on torso
• October 2015
  Reduced flakiness
• November 2015
  More islands of sparing on torso and some on face
• December 2015
  Feet start to sweat a little bit
  More islands of sparing
• January 2016
  Flakiness reduced, More islands of sparing
• February 2016
  Redness receded from my feet up to my stomach, skin is normal colour
  Islands of sparing across arms
• March 2016
  Sweating has returned across most of my body
  Islands of sparing across torso have spread so the redness now appears as a web
• 
  
  

methotrexate update

Ive been on methotrexate since last August.  In that time my skin has improved greatly although i dont know how much of that is because of the methotrexate and how much is because it would have improved anyway.

Ive had a call from my GP this morning saying they dont want to renew my methotrexate perscripsion because the results of my last blood text were borderline.

I am seeing a dermatologist on Monday and will discuss it with them.

If i do have to come of the Methotrexate at this stage i have no idea what affect that will have.

#TakeControl

A year ago today I saw my dermatologist for the first time and after looking me over he told me I had a rare skin disease called pityriasis rubra pilaris. . Thankfully he wrote it down for me. I didn’t realise at the time how impressive it was for him to diagnose me so quickly. Last year I lost control of so many parts of my life. It wasn’t all down to the PRP, another reason was the job I started last year. Although I did, and still do, love the job,it meant I spent 3 days of most weeks living out of a hotel in Newcastle, the other side of the country. Then there was the slow and painful breakdown of a ten year relationship. While the PRP and me being away contributed to the end of the relationship, they wern't the only factors.

So what did I loose control of?

• My appearance
• My time (most of it seemed to be driving between blackpool and newcastle, or going to the hospital)
• My personality “This disease can eat away at your personality.  You can become too tired to engage with people and when you do, you can end up only talking about your symptoms.”(from my blog Wednesday, 3 June 2015)
• The clothes I could wear. I spent most of the last year in the cheapest primark t shirts I could get because the creams I put on meant I had to bin them after a wearing them a couple of times.
• Where I slept. Part of each week was in a hotel room and the rest of the time I was in the spare room because of the amount of skin I was shedding.

You get the idea. So that was 2015. Now we are well into 2016 and my skin seems to be well on the way to recovery. I have moved into a flat in Newcastle and I am doing everything I can to retake control of my life. I have taken control of my appearance by going to the gym for the first time in years. I've lost over a stone in the last 5 weeks. I am taking control of my health by emailing the staff at the local hospitals dermatology department. This has meant that instead of waiting till august for an appointment, I now have an appointment in 2 weeks time. Anyway, thats my mantra for the time being #TakeControl

Dermatologist update- good news

It looks like my emails to anyone I could find in the dermatology dept of the local hospital have paid off.  All going well I should be seeing a dermatologist in the next couple of weeks rather than August.

Between dermatologists

I’m reluctant to write this post as it may come across, especially to my foreign readers, as knocking the NHS.  I want to state for the record I think the NHS is a fantastic service, it is one of the best things about living in the UK and it needs to be defended and supported.

Now ive got that out of the way, the last time I saw my old dermatologist was Christmas Eve.  I then moved to Newcastle at the end of January and signed up with a new GP.  My GP said it may be about 3 months before I got to see a dermatologist and I got a letter on 11^th February telling me I was on a waiting list and to phone back in 6 weeks’ time if I hadn’t heard anything.  So I phoned yesterday and was told it will probably be August before I get to see a dermatologist.  AUGUST!!!!

A couple of things to note:

• -          I realise my skin is improving in leaps and bounds at the moment, and its not like I need the kind of support I needed this time last year
• -          I know the NHS is stretched and these waiting lists exist for a good reason
• -          But AUGUST!!!!!????

So I have been in touch with the following people to see if they can help:

• -          My old dermatologist via his secretary
• -          My GP surgery
• -          The Dermatologist department at Newcastle RVI

If anyone else has any suggestions, please let me know.

Look at my belly

So other than the occasional vain selfie there hasn't been a photo for a while. So here is my chest and belly. As you can see the islands of soaring have spread to the point where there is now a web of red.