Last post

It's been a long time since I did a blog post here and this could be my last one. There hasn't been a great deal of change with the Prp. I still have a few red spots on my chest, I am still scratching my scalp and pulling out white clumps and I'm still on the methotrexate and folic acid. But I wanted to draw a line under the prp and just say how it had a far greater impact on my life than I could have imagined.



So back at the start of 2015 I had a life I thought I was settled in. I had been living with someone I loved for the best part of a decade. The first major change was my work situation which meant I spent a couple of nights a week away from home staying in hotels. Then in February my scalp became itchy. This was the start of the prp which would go on to move down to cover my entire body. Around the same time I noticed problems with the relationship I was in. As I mentioned a few times on this blog the combination of the work situation, the breakdown of my relationship and the flakey red skin meant I had no control over any part of my life. This included how I looked, what clothes I could wear, where I slept (hotel rooms or the spare room at home), etc.


So fast forward to early 2016. I left my partner, moved to Newcastle, which meant no more staying in hotels, and took control. The prp had started to improve but moving really increased the rate of improving. I particularly took control of my health by starting to exercise for the first time in years. At first I went to the gym but as the weather improved I started jogging. It's now September. 2 weeks ago I completed the great north run half marathon and 2 days ago I completed the Berlin Marathon. My first marathon. I've lost about 2 and a half stone since January 2016 (about 35 pounds).

I'm not saying life is perfect but I am proud of what I have achieved and the control I now have. There is a parallel world where I never got the prp. Maybe I am there still living in blackpool with my other half. I'm glad I'm not living in that world.


Me before the prp





Me after completing a marathon

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

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.

Sweat

I'm sweating! Not all over but my legs, the sides of my stomach, the middle of my back, my nose, my hands and around my temples. It takes work for me to start sweating. 45 min spin class followed by 15 mins in a sauna. But the fact that I am sweating is an important step on the road to recovery.  

My chest is still red and blotchy and my face and scalp are still flakey. But things are heading in the right direction 

not much to say

Well life is still a bit messed up. A month after moving from Blackpool to Newcastle and so far living on my own isn’t as scary as I thought it would be. My life seems to be becoming more and more of a crap soap opera. But anyway this blog is about my skin so heres the update. Legs still looking good, face and scalp still flaky. Thats it.

Update- good and bad

Legs – looking really good.  With everything going on I hadn’t really noticed until now but my legs look pretty much back to normal.  They are back to their pastey white colour. Having said that they still don’t sweat, but a hell of a lot better than they were.

Stomach/chest – Still red which white islands of sparing.  Getting more of these islands, which is good.

Arms – Like the stomach, reddish with islands of sparing. Also there are various geometic lines all over my arms.

Face – I have noticed a lot of relatively big flakes falling from my forehead on to my nose or glasses.  They might be tiny to everyone else, but from my point of view each one is the size of a car. I am constantly wiping/cleaning my glasses.

Scalp – Itchy and full of flakes.

Year one

I am not sure what day I first  noticed the itchy flakey scalp. I first went to the doctor on 16th Feb 2015, so i think my symptoms must have started around the 10th Feb. So that makes this the one year anniversary, more or less. 

It's not been the best year of my life. Having said that I will count my blessings. I have never been in a lot of pain with the Prp,  the skin on my feet never became so bad I couldn't walk and in general things are improving.   

Rather than reflect on the shittyness of the last year, let's have a general update.  My scalp has been very dry and flakey, and over the last couple of days I've noticed my face become a little more flakey, but other than that, no real change. 

I joined a gym recently and yesterday I did my first spin class in over five years.  It was knackering but, because of the Prp, I didn't sweat, which seemed particularly odd. 

nothing will keep us together

A year ago my other half was planning a holiday of a lifetime to Thailand for my 40th birthday.  The holiday never happened because of PRP. This week I moved out and our relationship of just under ten years, came to an end. The PRP wasn't the cause of the problems, but it made it a lot harder to try and fix things. So now I'm fat,forty and flakey...and living on my own for the first time in my life. Actually I'm not that flakey, the skin has definitely improved over recent months, but I'm almost expecting a bit of a relapse due to the stress of it all.  I hope I'm wrong.  

My eyes!!!

Yesterday I went to the Optitians to find out about getting laser treatment for my eyes.  I admit this is partly for vanity reasons but also because my glasses are constantly covered in a layer of emollient and flakes.  Because of my astigmatism, I was given a quote of between £3000-£3500 (ouch).  So then the Optitian had a proper look at my eyes and said I couldn't have the treatment now because my eyes were unusually dry.  This could be because of the PRP but more than likely it's due to the methotrexate.  Also because of the dryness of my eyes I would struggle to go back to contact lenses at the moment.  That's not even taking into account I have no idea how I'd put in contact lenses when my hands are constantly covered in grease and flakes.  So it stuck with the glasses for the moment. 

Feeling (relatively) good

I know I'm tempting fate by saying this, but this week I really noticed how much my skin has improved . I had a shower on Wednesday morning and didn't have to put cream on straight afterwards, ok I was a little itchy, but I survived.