man-flu

I've got a cold at the moment, which is mildly annoying. I've decided to skip my methotrexate this week as it reduces my immune system. lets see what happens.

Metamorphosis

Nearly a month since my last post and everything is still improving. There isn't a great deal more to say than last time about my skin, so I'll be self indulgent and talk about me for a bit.  In the last few months I've been going to the gym and I've lost 2 stone, I really love living on my own and I have made loads of new friends up here in Newcastle as well as reconnected with old ones.  I am doing my best to keep in touch with the good friends I had in blackpool and the north west.  A year ago my self confidence was so low, I was petrified about going on holiday to Portugal with friends.  In two weeks time I am going away to Berlin on my own, and I can't wait. 

While my self confidence is really good at the moment, I have been thinking about how bad my mental state got last year.  I was watching the film "the fly", and reading the short story "metamorphosis" by Frank Kafka. Both dark stories about men who turn into revolting insects.  Not just about what they became but also how their loved ones behaved around them.  I guess it summed up a lot of how I felt at this time. 

But that was then and now things couldn't be more different. 

Getting there

It's been a while since I blogged so an update is overdue and it's nothing but good news.  There are some red spots still on my chest and my scalp is still a bit crusty but other than that things seems to be going back to normal.  I am sweating as much as anyone else. In fact I hope no one saw me when I got off a bench at the gym and smile to myself when I saw the sweat patch I left behind.  :-)

 

I remember I read on the Prp Facebook group that when you do come out the other side your skin looks better than ever.  I think it's true. No one can believe I'm 40. 

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