When I was told in April 2017 I had MS it was so daunting. I had rushed from work to my hospital appointment expecting to get the results of a recent blood test. As I arrived at the hospital I was called straight in from a crowded waiting room. The consultant asked if I knew why I was there and I simply said ‘To get my results?’ and she replied ‘We think you’ve got MS’…..but I’ve only come for my blood results I thought….but I’ve got to go back to work….but what about my little girl? How am I going to tell her? What am I going to do? ‘I’m going to faint’ I said, and I did – my brain had just completely shut down.
It’s been a horrible rollercoaster since. However each day, each scan review, each letter, each appointment are scary hurdles that we all have to get over until we get to the point of choosing a DMT.
This is my brief story of how I made my choice to have Lemtrada as my first DMT from April to today:
I was initially told I had mild to moderate MS which was possibly benign. I had my first symptom of a partially paralysed right eye in 2003 when i was 27 which got completely got better after a few monthts, but then no other symptoms until June 2016.
Choosing a DMT to deal with the diagnosis, and symptoms post June, has probably been the biggest decision I’ve ever made. I’m a police officer so I don’t say that lightly – maybe its harder making decisions about your own life than other people’s lives though and Ive got a 5 year old daughter, a fiancee and my wider family to think about too.
I read lots of articles, trawled the internet for days on end for all of the good and bad news about DMTs. I wrote a list of pros and cons for having a more effective DMT like Lemtrada – the list of pros was ten times longer than the cons. My life has been impacted quite badly by MS since June (I know everything is relative but its been quite hard from my perspective) – first vertigo that saw me being sick out of the car door in rush hour traffic as I was driven to hospital, not being able to do my job, not being able to drive, not being able to look after my daughter, having a constant fog – like a head cold – having a numb side, double vision and feeling sick every day for a whole year – except for literally a couple of days. However, I have been given an EDSS of 1.5 suggesting Ive got more or less no disability at all – I think it’s based on the fact that I can walk with only minor balance issues and all of my symptoms are slowly – it seems – getting better.
I have realised that there is alot of help out there. That the neurologists dont all necessarily know the right thing to do or get things right – mine made mistakes when reviewing my scans and suggested my disease was more severe than it was. My MS nurse said the neurologists are so busy they can often make errors. I have realised that MS is such an unknown quantity that it really is about gathering as much information, from as many sources as you can – neurologists, family, friends, forums, internet, blogs, nurses etc – and then doing what’s right for you. It is daunting, but only we know whats right for us.
As a result of the research, I have got my head round some of the key possible side effects of Lemtrada… 1 in 3 thyroid problem which is treatable with medication, 2 to 3 in 100 chance of ITP again treatable, other chances of kidney disorders – again treatable. My nurse actually said that they would choose Lemtrada in my situation too – I should start taking it in about 3 months.
I have had great advice on her from @tracyd @stumbler @sandwich to name just a few – thanks for everyone’s advice
“You do have a bit to think about now.
As you’re probably aware, the latest philosophy seems to be to hit MS hard and hit it fast. This tends to point you straight to Lemtrada.
The conservative approach would direct you to the first line injectables. This would be a regime that you’d need to integrate into your normal daily routines, even if you want to go on holiday.
But, there’s a range of meds in between, e.g. orals and infusions.
The question is whether you would wish to start at first level and risk potential further damage, which may be disabling, before you considered moving up.
It’s a difficult call, but you need to include your lifestyle into the mix when you make your decision.”
@stumbler : “you have your diagnosis and have been offered some treatment.
However the scans are interpreted, you still have a degenerative neurological condition, which may progress and may cause you disabling symptoms. So, you need to look forward and decide how you wish to manage this condition.
Rebif and Lemtrada are at opposite ends of the effectiveness spectrum. Rebif has been used for many years, whilst Lemtrada is the latest hope for sufferers. Present philosophy is to hit MS hard and fast, to minimise any potential disability.
Do your research and make your choice. The following might help:-
@tracyd : “Personally when I was diagnosed I went to war – screw this ms nonsense I wanted it flattened in a corner crying for its mummy.
I didn’t wait to be offered what I wanted I told them and fought for it. As a newly diagnosed my choice was Lemtrada to stop it in its tracks. I am mow 2 years post treatment and my ms is inactive no new lesions no activity. I would do this Every year for the rest of my life if that was what it would take to keep this MS shit in its box xxxx”
@sandwich :”It took around 3 months to start mine however at the time the treatment had only recently been approved and it took time to get the resources together. It does vary though and bed space can be a problem. Facebook have a UK Lemtrada page and there are lots of personal stories on there.
Good luck at your appointment. I had my annual check up today and the neuro confirmed no change re EDS score which is good news. No third round is needed for me as it stands. They are pleased with the overall response from the Lemtrada cohort to date and from talking to them today they are very pro treatment for the newly diagnosed. Times have really changed since I was diagnosed and in a good way. There is a real shift to treat now.”
“I was on tec, then a MRI scan showed ms was active still so Neuro suggested I step it up. Was offered 3 alternative drugs.
I wanna start a family soon so lemtrada was the only option. Anyway- was scary in run up but love not having to take tec, was tricky finding protein for every meal lol. The lemtrada has really made a difference already to brain power and balance is a little better”
Hi there, are you worried about ITP or do you have it? My daughter has had it for 10 years and has been through 4 London hospitals in the pursuit of effective treatment. She manages her life well now. She is an unusual case in that none of the treatments she had could raise and sustain her levels to a safe level. However, for the last year she takes an oral tablet which is working well. Most people don’t have it as severely as she did however.In her case, her immune system is so strong that it eats her platelets the second they are created. In others, their body just doesn’t produce platelets effectively. With really low platelets the main concern is that you can bleed heavily following a cut or injury. A blow to the chest, stomach or head means you should go to hospital in case there is internal bleeding you can’t actually see. Airlines don’t like to carry passengers unless their levels are a minimum of 30 although this depends on the airline. Dentists won’t do surgery or heavy fillings unless platelet level is out of the danger zone. My daughter needed an extraction once; she went into hospital for an infusion and her tooth was removed in hospital. She also suffered with some depression as a teenager; her doctor told us that low platelets can affect serotonin .
I’m sorry to give you so a lot of information, and I must reinforce that her case is quite unusual. For most people with ITP, it is a temporary condition and easily treatable. Even with chronic ITP she has gotten through Uni and is now a college teacher. She wears a medical bracelet and always informs her workplace/ friends that she has the condition. As with MS, in the last 10 years, more and more treatments have appeared. A good place to start would be your local healthcare trust or hospital website.
Ive also pulled together some of the best insights i got about MS. I hope they can help other people in the same way they helped me:
“Doing nothing carries the biggest risk, in my view” | MS Trust
“Now (as we know as ’63 and ’64 babies) I have age to contend with, as well as the disability impact of a lack of diagnosis. In the circumstances, I have be been supremely fortunate to have been given Alemtuzumab, but as an Oldie, I’m not going to retrieve what I’ve lost.
If I’d known, if there had been an early diagnosis – would I have chosen treatment and a strong one at that – as far as I’m able to state retrospectively – most definitely! No diagnosis then no decision as to the options – you don’t know you need ’em!”
SJ also said “Until there are better genetic tests or biomarkers that can predict how severe your MS will be, I think that early, aggressive treatment makes the most sense. I advocated to receive alemtuzumab after my first relapse and my neurologist supported my decision. I just felt that preserving my brain from potential damage was worth the risks. This is consistent with the precsutionary principle in my field: “Where there are threats of serious or irreversible damage, lack of full scientific certainty shall not be used as a reason for postponing cost-effective measures to prevent environmental degradation.” You can swap out environmental degradation for neurodegeneration and you’ve got the animating principle behind my treatment philosophy.”
I also found this article which describes how ITP is more like the juvenile version of the disease and apparently more easily treated:
If I have quoted anyone without giving credit then I apologise and will add the credit if necessary. Thanks to everyone who takes the time to share their experience and respond to questions – it’s really helped me and my family.
Thank you 🙂