My recovery and beyond

I was discharged on Thursday  23rd September and my recovery was to be long and hard. I was weak, a slight frame to start with, at 5'6" I weigh about 120 lbs, I lost 10lbs and from my time in bed my muscles had started to waste. I was still suffering from the effects of my 'burnt' skin which was red and uncomfortable but surprisingly still not itchy,  I moisturised it 4 or 5 times daily with the prescribed cream and it drank it like a sponge and  the night sweats were still with me. I struggled at this stage to be able to walk upstairs or to be able to perform the simplest of tasks.  I was told rest and gentle exercise were the only solutions. My family nursed me, I was like an invalid, but little by little I started to improve.  It was however to be a year before I was fully recovered.  I reduced the steroids gradually, yes I had problems with withdrawal which was hell and had to go up and down many times until I settled on a steady dose of 5mg just to control my RA, which had disappeared throughout my illness,  but gradually returned as I got better.  My Rheumy would not think about further treatment until he was sure I was strong enough, he was still talking anti TNF. Alarmingly my hair continued to fall out, it fell out  in the shower when I washed it, fell out in clumps on my brush , and fell out  on to my shoulders clinging to my clothes. My hair was thick to start with but  gradually it got thinner and thinner until I got to the point where I looked on the mirror and my parting seemed very wide and my scalp shone through like a beacon!   I know I was lucky to have survived, but I cried, life seemed so cruel I had been through so much and now this.  By the New Year, 2011, my daughter was so upset for me by my hair loss that she ordered me some supplements, ridiculously expensive, but after a few months my hair started to spout! (This is a shortened version of the agony, trauma, stress and despair that I felt). It was so thin it was transparent and I continually pulled at the sides to make sure the wind had not blown a hole in it...I had it cut shorter to try and disguise it...but thin hair is thin hair and that's exactly how it looked.  Now, it is still not back to where it was but I'm getting there!
My GP told me it would be  a year for me to fully recover and that I had Post Traumatic Street Syndrome and would benefit from therapy....I took her advice...It helped...made me revisit events and try and put things into perspective.
My eldest daughter gave birth on 27th February to my beautiful granddaughter Ellie, and I was lucky enough to be at the birth...what an experience...what a privilege...what a joy!...

The birth of my Granddaughter looking frail and tired..thin hair..and wheres my fringe gone

I continued to get better bit by bit.....but my RAD got worse...
I visited my Rheumy in April 2011, I had 18 swollen joints 6 tender joints CRP of 16 and ESR 5...this gave me a DAS score of 5.53....and I thought I was doing OK!  We agreed that the nurse would repeat my DAS score in 4 weeks time with a view to starting Anti TNF therapy.  Cimzia was the drug that was being talked about at this stage, I'm sure that this was primarily based on cost as the manufacturer was providing it to the NHS free of charge for 6 months.  My DAS score was repeated and had not improved, by this stage I had researched again the various Anti TNF therapies and had decided that I wanted to try Enbrel, I felt it was the most appropriate, had good results and had been used for a significant period of time, my case was put forward to the Primary Care Trust and it was approved.  I was on holiday in Spain for 3 weeks in June/July and managing to get by OK on my 5/7.5mg prednislone, so I  arranged my first delivery of Enbrel by Health Care at Home for the end of July.   The Enbrel sat in my fridge for the next few  months...I  have always been scared of the meds prescribed but my experience the previous year had left me feeling vulnerable and doubting my own bodies ability to cope...

July 2011 Feeling better and hair starting to grow

October 2011 came and my Rheumy made me see there was very little choice, I could not carry on taking prednislone and the likely hood was that I would need ever increasing doses to control my RAD.  The decision was made!  It was agreed that the Rheumy Nurse would supervise my 1st few shots as I was so nervous. The day arrived, Tuesday 11th October, the whole process was a blur I was literally hyperventilating...I know many of you reading this will be saying...oh for goodness sake pull yourself together...and that's exactly what I would of said to someone else..I know this fear is not rational..but my experience has made me realise how fragile we all are ...and how easily your body can react to a substance it does not like. My fear is out of my control.  Anyway..the deed was done...it stung but I felt surprisingly OK . The following morning I felt great...enbrel..I don't know!  By the Saturday I had  some slight spotting, which is a no no for a post menopausal woman.  A trip to my GP on the Monday, a referral to a Gynaecologist for the Thursday.....bloods, ultrasound and MRI...My fibroid had grown and after Menopause 'this is a real cause for concern'...I needed a hysterectomy....'could be something nasty'..they couldn't tell. My Gynaecologist said 'lets do it as soon as possible how about next Friday 28th October'.  Of course  the Enbrel had to stop for surgery, I'd only had one shot.. The week passed in a blur, scared as hell but didn't really have a choice..I'm not going to expand on my Hysterectomy as it isn't really relevant to my blog, but all went well Total Abdominal Hysterectomy with Bilateral salpingo-oophorectomy  (hows that for a mouthful)...all gone! Just in case your interested  my Uterus with the fibroid in weighed nearly a kilo, normally should weigh 60-80 grams I believe and measured 18cm , wow how had I managed to fit that in! Six weeks recovery, no complications and  again my family nursed me back to health and in December I decided I was ready to try Enbrel again. I had a slightly sore ear but nothing too bad.  The second time round I felt quite relaxed about it and on 20th December the Rheumatoid Nurse showed me how to inject with a view to me doing it myself the following week... Christmas 2011 was good...pain levels and stiffness were low...but ear was bugging me..on 26th December I went to my GP who decided I probably had an ear infection so prescribed Amoxycillin 250mg, we discussed my previous DRESS Syndrome but she felt that as I would have to take antibiotics at some stage in my life and as I had taken this before, she was sure I would be OK.  I took the pill at 6pm, at 1am I woke and my ear was hurting so came downstairs to take another antibiotic as I felt OK...looked in the mirror and was covered in a rash!  I made a phone call to the out of hours doctor and he told me take antihistamine and go straight to A and E.  I was fast tracked when I arrived..(the usual wait in A and E is probably 4/5 hours!) and  by this stage the rash had covered my body and my face was bright red and shiny! My first thoughts and fears were that I was going to have a repeat of my DRESS syndrome  and all my worst nightmares came back to haunt me. I was given IV antihistamine and IV Methylprednislone and was kept in all day to monitor my bloods, in particular my liver, which thankfully was OK.  I was discharged on a reducing dose of predinslone (again) over 2 weeks starting at 40mg.  The rash was itchy and absolute hell and I felt out of sorts for about 5 days but  gradually it subsided and after about 10 days I was clear.   Once again I had only managed to have one shot of Enbrel.   A sore throat and a cold followed which I have only just managed to shake off...I still have a sore ear but it doesn't seem infected and I'm putting it down to RAD...So here we are...an appointment with Rheumatologist next Wednesday 8th February 2012 and an appointment with the Rheumatoid Nurse on Thursday 9th for me to self inject....3rd time lucky my Enbrel journey is about to start!