So here we go - day 1 in deail
Arrived at 10am, I've moved around a bit while they take a last minute blood test (not got AIDS - YAY) lst minute pee test (not pregnant)
!2:30 - Canuler is in, IV anti Histhamines straight in and Steroids hooked up - must ask what the Anti-H was ... good stuff in that, it's not like me to take a pensioners nap sitting upright in a hospital chair but it knocked me out during the Steroids were done
13:30 - Steroids done, I'm on the foxes glacier mints already to combat the metalic / nail varnish remove taste in my mouth.
15:35 - Lemtrada starts 4 hour infusion at 25ml and hour. Side effects : Headache ... the nasty railroad spike in the head variety, apparently they don't have a perscription to give me any after the dose with the Steroids so I solved that problem with a trip downstairs to WSmith for a packet of Anadin Paracetamol ad thye're noting what I'm self administering. There's a GENZYME Rep here 'supervising' my treatment but not allowed to 'befriend me' - todays rep probably won't want to befriend me when I point out that if their instructions for administration and care treatment don't include this they're crap and need to address it ASAP.Blood presure was up and down all afternoon and evening but heatrate stayed pretty constant.
19:35 - all cooked on the Lemtrada front, quick saline flush to get every last drop out od the line and then freedom.
So far no real exacerbaation of relape symptoms as a result of treatment though it's a little ominous that they've left a walker at the end of my bed (hopefully not a sign of what they're expecting)
Must ask more questions today about Anti-H and steriods, how much what is it etc. Tina has asked could I get hold of one of the Lemtrada bottles - they're so very tiny for £7,000 of mediction but they do say good things come in small packages.
I slept really well last night once I actually decided to sleep so this morning I'm bright eyed and bushy tailed - as aopposed to bushy eye's and a bright tail :-)
Today looks like more blood pressure fluctuations and possibly heart rate ones based on everyone elses experiences - I will keep you ll infomrned
Sun is shining through the windows and first conference call of the day in 12 minutes - it's all good, my immune system is 20% squished, hope you're all good xxx
It's been over 7 years since I started on my Lemtrada journey. It's a marathon not a sprint and in my case it's got a spin off show too now I'm on Ocrevus. Best decisions I could have made, no regrets, fight for yourself because you're the best person to do it This is normally updated weekly please subscribe so it will tell you when I've updated it
Tuesday, 19 May 2015
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