Tuesday, 9 June 2015

The UK Lemtrada 'what happens when' guide

I'm going to start with the caveat that this was 'my running order' it doesn't happen precisely this way everywhere but it should give a lose guide to how things will proceed after you and your neurologist agree you are suitable for the treatment.
If some of the non UK based readers can copy paste and update a little to a 'local guides' thing in the comments for this then I'm pretty sure others would be very grateful xxxx




Lemtrada – Basic treatment running order from Agreement to consider you as suitable for Lemtrada to post treatment and release – UK PATIENTS NHS ONLY


UK based people and Lemtrada on the NHS timeline which may help people get an understanding of the order things happen in.


 


Pre-Treatment Running Order :


  • You agree with your Neurologist that they will put you forward for treatment by your local authority (mine was Hampshire health authority) and they have to agree you meet the criteria, active disease, active lesions, other treatments failed or unsuitable,  and that they will meet to agree to fund your treatment (£56,000 for the Lemtrada alone and then the additional costs of the monthly blood / urine tests for 5 years – they start after your first treatment and end 4 years after your second)
  • You will have a chest X-Ray to confirm you don’t have TB (tuberculosis)
  • An MRI – Certainly head and neck, but likely to be Head, Neck and full spine – be warned this takes about 1 hour 40 minutes and you’re probably going to have a thumping headache when you come out. This is to get a baseline on your lesions and their activity to use as a comparison for post treatment MRI’s
  • Blood tests to confirm a load of things including you don’t have AIDS or Hepatitis and a bunch of other stuff – This needs to be within a few weeks (3-4) of your treatment start date so don’t panic that this is might be left very late
  • Urine tests – not entirely sure what they look for in there, but I did get my MS Nurse call me to tell me I wasn’t pregnant ….. I hadn’t expected to be and would have been very surprised if I had been
  • Important thing to note – you are required to drink 3 litres of water a day during and after your treatment – DO NOT turn up on day 1 and think this is it. Drinking that much water means a revolving door to the bathroom – you will have a bladder the size of a PEANUT. It takes 2-3 weeks to get used to that quantity and when you’re plugged into a drip for 5+ hours you need a bladder the size of Belgium so you’re not running back and forth to the toilet !!!!!
     
    During Treatment Running Order :
    Day 1


  1. Admission and if they need to do any repeat testing they will do this first – Urine test – they’re making sure you aren’t pregnant again (Very important for the boys ;-)….)
  2. Cannula  in for the infusions. It depends how easy you are to Cannula , and the policy of the hospital you’re in. This may be in your inner elbow, the back of your arm between your wrist and elbow, back of your hand or anywhere else random they like to stab people – it doesn’t really matter
  3. Oral Anti-sickness meds – I never felt sick during treatment so I presume they worked nicely
  4. Anti Viral Medication  - to keep away pesky stuff like Hepatitis, Thrush and if you’ve had chicken pox in your younger years then Shingles is a possibility as the virus remains in your spinal fluid then shingles is how it comes back
  5. Paracetamol – well I was given it at this point anyway
  6. Saline solution to flush the drip line (just a push with the syringe)
  7. IV anti histamine (just a push with the syringe)
  8. Steroids  Drip bag on a stick thing takes 30-40 minutes depending on how quickly your veins slurp it up – Keep mints handy – IV Steroids leave what is described as a ‘metallic taste in your mouth’ personally I think it tastes like nail varnish remover smells but it goes when the infusion is over.
  9. Lemtrada – the good stuff – The drip is set up for a 4 hour controlled infusion – This can be slowed down if they you need it over a longer period – for the first 2 hours they will do OB’s (Observation’s) to monitor your Heart Rate, Blood Pressure and Temperature every 15 minutes to ensure you are doing well with it. After 2 hours they relaxed my OB’s to every 30 minutes for the last 2 hours then every hour for the next 4 hours.
  10. Saline solution to flush the drip line – this will be a drip infusion and will probably take 30 minutes to flush every last drop of the Lemtrada from the IV line into you
  11. Oral Anti-sickness meds – I never felt sick during treatment so I presume they worked nicely
  12. Anti Viral Medication  - to keep away pesky stuff like Hepatitis, Thrush and if you’ve had chicken pox in your younger years then Shingles is a possibility as the virus remains in your spinal fluid then shingles is how it comes back
  13. Headache is a possibility at this point – not everyone gets the ‘ice pick in the brain’ headache but Paracetamol does get rid of it – make sure you get some if it happens don’t suffer – I went down to the hospital shop when they said it wasn’t part of my prescription and sorted this myself
  14. Through the night they will relax the OB’s to ever 2-4 hours so you can sleep – take ear plugs and an eye mask – hospital wards are full of sick people who are noisy and it’s not dark so do everything you can to help you sleep


Day 2


Repeat all steps 3-14 (possibly with or without headache)


Day 3


Repeat all steps 3-14 (possibly with or without headache)


  1. Possible that the Lemtrada rash may appear or start to appear at some point today – if it does ASK for more Anti-histamines – don’t wait for them to appear magically ask for them.


Day 4


Repeat all steps 3-7 and 9-14 (possibly with or without headache)


  1. You may or may not get IV Steroids on Day 4/5 some people prefer to have them, but I don’t know if it makes a difference. Personally I didn’t and it wasn’t a problem
  2. Day 4 is traditionally RASH DAY – not everyone gets it but those of us who did  it was full blown rash day 4 (possibly with some itchies preceding it on day 3) A lot of the people I’ve talked to say it comes on about 5-30 minutes after the Saline Flush at point 9 – If it happens ASK for more IV Anti-histamine straight away – There’s no mistaking it, you’ll look like you’ve been rolling in nettles or been the victim of an acid attack and you will suddenly have a deep and horrifying understanding of why wishing ‘May the fleas of a thousand camels infest you’ is such an awful thing to wish on anyone – I would happily have clawed my own flesh off despite the creams and gels that I and others have recommended.


Day 5


  1. Last one – same as day 4 hopefully without the rash – if the itching etc persists just keep asking for IV anti Histamine they can give up to 4 doses in 24 hours !!!
  2. RELEASE – You will get Anti Viral’s to bring home, mine are Twice a day for 4 weeks, Oral anti-Histamine (4 a day if required) to be taken when needed, Paracetamol in case the headache still persists.


RELEASE DATE + 4 weeks and EVERY 4 weeks for 5 years


My MS nurse has scheduled all my monthly blood and urine test for the next year in advance – every 4 weeks I have to either go to the Pathology lab at Basingstoke Hospital take a number and sit in the waiting room from hell or I can make an appointment with my doctors and have it done at my surgery in comfort – I’ve chosen Plan B, doctors for me every time. My next Neurologist appointment is August 8th and I expect another MRI before the end of the year


There may be slight variations on this from hospital to hospital, but this is the gist of it.


 You may come out of hospital and feel great Steroids bring down the inflammation in your brain and spine very effectively, but it’s a ‘quick fix’ not a permanent one. It will last somewhere between 3-8 weeks and then you may experience ‘Steroid Crash’ it’s like your MS has all returned in a bloody big tidal wave and may even feel like a severe relapse … it’s not usually, you just truly have felt that crappy for a very long time but it got worse over a very long time and until it hits you in one go you don’t realise how very bad it was. Take heart, if 3-5 days steroids can give you this, there is hope with your immune system squished your central nervous system has 2 years to make some repairs and the steroids have shown you that you’re not completely buggered after all.


You may be incredibly fatigued; Did you come out feeling great and all excited and use every drop of your energy in one go? were you incredibly fatigued when you went in? did you sleep well in hospital? Did you sleep well before treatment? Have you slept well since treatment? Are you eating right? Are you still drinking your water – you were not supposed to stop when you left the hospital you need to keep this going for as long as possible it’s very good for you.  You need to do everything you can to support your body before during and after treatment, is there something you could do? Vitamin supplements or mineral supplements, personally I recommend Oxygen Therapy at your local MS Therapy Centre, it works wonders for me. Lemtrada isn’t a magic bullet, support yourself and give yourself everything you can to help what Lemtrada has done to aid your recovery but please don’t sit back and wait for the miracle to turn up on it’s own, be kind to yourself and your body treat it to healthy things and nurture it whilst reaching forwards to grab that recovery with both hands and drag yourself towards it as fast as you can


Hope this helps xxx

5 comments:

  1. Wonderfully clear

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  2. Thanks Tavvycat, remember this was my schedule at Southampton general in the UK it does vary, but it's the gist of it xxx

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  3. Thank you for sharing this really helps so much.

    ReplyDelete
  4. Has anyone experienced having to take a lengthy time off work due to blood cells not recovering as expected?
    I am a nurse and can't return to work yet - its been 4 months!
    Feeling a bit low!

    ReplyDelete

Time for an update another round of Ocrevus in the bank

 So it's been a long time (again) I'm going to stop making hollow promises and just say I'm going to keep updating and won't...