18 Months on & Still standing....Just!

[AMJM2002]

Hi, I am new to this but thought I would share my experiences of the last 18 months which may make interesting reading...or not!

I am a 37 years old & having suffered with Psoriatic Arthritis for 15 years was managing along just fine popping a few pain killers & anti-inflamitory pills each day. Following a car accident on June 2011 I was also diagnosed with diabetes.....Great, another pill to pop!

My Vasulitis started shortly after Christmas 2012 when I had a sore throat and a couple of days afterwards, 6 extremely painful spots appeared on my left calf. They were very sensitive to touch and after showing my wife ordered me to the GP surgery straight away.

He diagnosed me with a viral infection and quickly put me on antibiotics for a week. After 3 days things were so bad that the red spots had spread to both legs and seemed to have clustered together. They were a dark red colour and were bleeding within 48 hours of appearing. I could not wear socks, shoes or even trousers as I could not bear anything touching my skin.

I went to see an out of hours GP who very quickly sent me to the Acute medical unit at the Norfolk & Norwich hospital, where I would spend my 1st night in hospital. After lots of tests throughout the night I was diagnosed with some form of Vasculitis. I was told to take 30mg of steroids for a week and then come back for an outpatient appointment to see if they had improved.

When I returned a week later things had got noticeably worse. The red spots had covered my whole legs from thigh to toes and joined together to form blisters the size of an orange. Once they had bled they scabbed over leaving big black extremely sore patches.

They tried to admit me again but I was a stubborn bloke who thought he could deal with this disease himself...how very wrong was I.

Within the next 4 days I got to the point that I could no longer walk, sleep or even go to the loo because of the excruciating pain, also my blood sugar levels had also reached an alarming 35

The Dermatology department found me a bed immediately and the next 16 months have been a rollercoaster ride.

If you would like me to tell more or would like to see pictures then I will write the next chapter soon.

Thanks Iain

[RichardE Volunteer]

Hi Iain,

Sounds like you've had quite an experience ! Hopefully after 16 months your consultant has seen you through the worst into a good remission though. But please do post more as we don't often hear about good experiences with Dermatologists. Although saying that I believe that the Norfolk and Norwich is known as a good place for Vasculitis treatment.

All the best,

Richard.

[cedric]

thanks for sharing your experience I agree with Richard do keep us imformed cedric

[AMJM2002]

Thank you Richard & Cedric, OK, will now try & tell what the past 16 months have been like.

After being admitted to hospital last January the 1st thing they wanted to do was debride the ulcerations as this would supposedly help any future healings. They waited 3 days as I was so unwell and did not want to distress me anymore and also give the enormous amount of pills they pushed into me a chance to work. When they eventually did start to Debride this has to be one of the most painful things I have ever experienced. Nothing they gave me worked for the pain & I sobbed like a baby throughout. I spent the next six weeks in a hospital bed not being able to walk & in excruciating pain.

I was eventually allowed to go home but told to rest & keep my legs elevated but still cannot walk properly and still suffer with lots of pain.

My legs are only now starting to heal but very slowly. I have to visit the Dermatology dept twice weekly for dressing changes & regular inliximab infusions.

I cannot praise my consultant highly enough for her dedication to me & support & understanding, also the fantastic nurses who have looked after me brilliantly & without them who knows where I would be. Also my wife & son who have also suffered this diseases with me

Its still a daily struggle but things are starting to settle down now.

Iain