Wednesday, 26 August 2015

Misconceptions about Lemtrada




Something that never ceases to surprise me when people chose and have this treatment is the misunderstanding of what it is designed to do. People hope that Lemtrada will stop the relapsing, stop the progression, draw a line in the sand and say ‘This far and NO more’.
Yes we all hear the wonderful stories of people showing improvement and it’s what we all hope will happen to us but this treatment doesn't come with that promise or guarantee.
Across social media we see so many statements that are frequently made weeks and months after treatment such as those below seem to reflect a misunderstanding of what the treatment fundamentally does.
  • 'I hope the Lemtrada is doing its thing'
  • 'I'm waiting for Lemtrada to make me feel better'
  • 'I'm waiting for Lemtrada to start working'
By the time you leave the infusion centre / hospital after the 5 days of treatment, Lemtrada has bound itself to the T & B cells that comprise part of your immune system and it makes them explode. Within a couple of short weeks in your body Lemtrada has done its job. It's one and only purpose is to do this before it and those dead exploded cells are flushed out of your body via your kidneys with all that water you have been drinking.
From that point onwards Lemtrada does absolutely NOTHING for you physically it's job is done - it's gone from your body and you're on your own now
Lemtrada gives you both a reprieve and a fresh start, it allows your bone marrow to construct new B & T Cells to replace those destroyed by the Lemtrada treatment - this process takes most of the year to get back up to full levels of B&T cells and  for the first time in years your body is no longer under attack. - hopefully the new ones that your bone marrow cooks up will be better behaved and function more normally than their predecessors and not treat your Central Nervous System as a food source.
The steroids and treatment can be hard on the body making the first few weeks post treatment exhausting and feeling like it's worse after treatment than it was before, it's temporary but it's got to be really annoying when people like me bang on about feeling great all the time.
It’s like rebooting a computer that’s doing an annoying thing, you know by turning it off and on again you’ve not fixed it, but you hope the annoying thing goes away for a long long time.
Now it's up to us to do what we all already know we should be doing on a daily basis, not just because we have MS but because we’re people. We know that in order to reduce the general health risks such as heart problems, stroke, risk of cancers, arthritis, dementia, and just the general aches and stuff that happen as we get old there are things we ‘should’ be doing to protect and preserve our general well being
  • Eat healthily – those 5 fruit and veg a day are important to our vitamin and mineral levels. Don’t eat too much red meat, eat more fish especially oily ones which have those lovely Omega fatty acids which are so good for our joints and brain health.
  • Don't do too much bad stuff – booze, cigarettes and anything else you know isn't actually good for you – even if you didn’t have MS you know this doesn’t do you any good.
  • Drink 3 litres of water every day, it really is good for you, it doesn’t count if it’s coffee / tea / fizzy pop – it needs to be the real thing all naked and glorious – just water. Most people mistake what we think are hunger pangs and eat something, when actually your body asking for water, it’s dehydrated but it feels very similar – next time you feel hungry have a glass of water and see how you feel
  • Exercise a little, nobody is suggesting 2 hours in the gym or training for a marathon, just a little of something that pushes you, even non MS people are tired, ache and feel stiff after the first few bits of exercise in many years (think about the state of those friends who’s new year resolutions were to do more exercise / go to the gym and by the end of a couple of days of pushing themselves they’re exhausted and pretty much ruined), that’s normal, embrace it especially if it’s something you couldn’t even contemplate before.
  • Get plenty of fresh air and sunshine, even if it’s just sitting outside with a cup of tea or a glass of water, it really is good for you, recycled air-conditioned air doesn’t really do anyone any good
  • Sleep well so you’re refreshed when you wake up, the exercise and fresh air will help with this, but if you need to try a cup of hot chocolate before bed, don’t drink caffeinated things after mid-day or try a herbal sleep aid if you need to, but sleep is so rejuvenating for the body. If you’ve been getting a little exercise and fresh air it should come a little easier though.
Now this bit is simply MY opinion - do with it what you will.
The quality of the new T & B Cells that are being constructed are probably a reflection of the environment they are growing in, if we treat our bodies like crap then we shouldn’t be surprised when we feel like crap or it behaves badly.
Now is the time for us to take advantage of the lull in the storm – MS isn’t attacking us, and do what we can to improve our own health and wellbeing and protect ourselves against the barrage of things that just generally go wrong with human beings as we go through our day to day lives.
I think sometimes because we have MS we assume it’s the root of all evil and the cause of everything that goes wrong with us. We don’t simply regard ourselves as people, we regard ourselves as ‘MS’ers’ and forget that stuff goes wrong with ‘normal’ people too – every day. They wake up and something hurts or they’re physically exhausted and they think about what they did yesterday, and why that might have happened and treat it as something that happens to them as a consequence of their behaviours / age / lifestyle, as MS’ers we do have a tendency to put it down to MS and stop there.
I've compared Lemtrada to a battleship of a treatment before, battleships sit off shore and bombard a target - it's damned effective but if it bombards and sails away with no support from ground troops to go in and clear the area, make sure it is a safe and healthy environment for the locals to return then nobody would be surprised if perhaps something undesirable happens because only half the necessary work was done.
We are key to this treatment, we have to do what we can to make the environment of our bodies where our new T & B Cells are growing as hospitable and healthy as possible to give it the best chance of them being as healthy and normal as possible, for as long as possible.
There are no guarantees in life, nothing is certain apart from death and taxes, but all this advice about living in a health conscious way applies to us all even MS’ers and while we have a level of reprieve from relapses and progression have an opportunity to look at our health and wellbeing and have a bit of a ‘do-over’ and see what happens. Let’s face it how can a little healthy living and proactive maintenance of the great machine that is our body possibly be a bad thing for any of us?
 
Love and peace
T

4 comments:

  1. Hi Tracy, I'm on a waiting list to get an appointment to see the neuro about Lemtrada so I've found the above and all your posts really helpful, full of good advice and positive. I'm also going to chase up my appointment tomorrow. Thanks Madelene

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  2. Thanks Madeline. Wishing you the best of luck with your treatment and if you need someone to talk to I'm always willing to chat about this 😀😀 xxx

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  3. An idiot had my phone and closed the window I had reading your posts got to 5 months before he did that but question did you experience shortness of breath st random times or increased heart beat. I just started experiencing this and I'm on month 5. My foot has been randomly swelling and no one can tell me what to do

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  4. Hi Tiffany
    I have that when I have injections and cannulas put in me, or in the lead up to them, or when someone approaches me holding a blood pressure machine. I tend to have a quite overdeveloped panic mechanism. not sure about the foot swelling probably worth a talk with your doctor on that one as well as the chest and breathing xx

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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...