finchy 25/03/15
Last reply 3 years ago
Risk perception and DMDs

Dear colleagues

I have posted a recent blog on the subject of risk: how we deal with choices regarding disease modifying drugs. You can see the posting on http://www.whatmsmi.com. I would welcome your own comments.

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stumbler
3 years ago

@finchy , that’s a very good read.

However, your analogy, whilst good, isn’t quite correct. You are closely monitored to mitigate the risks, so you would have a greater insight into whether the next chamber was loaded. If there were signs that a loaded chamber was next, you’d have a choice of exploring other avenues.

But, a good read and I bet it was cathartic writing it. 😉


mumofmser
3 years ago

Hi quite thought provoking. I am at the beginning of this journey with my 17 year old daughter not yet had appointment for DMT but think we will be offered lemtrada. She has no ability to weigh up the risks and although a health care professional myself I am too emotionally involved to make such a decision. We do have to place our trust in the consultants making the best decisions with the available evidence and their experience. I find it quite fascinating having worked recently in oncology that this questioning of toxic therapies for cancer is given very little consideration by patients they just want anything you can throw at them. Cancer is a chronic illness for many just like MS.
I am hoping they will offer my daughter lemtrada but the potential side effects ITP renal are very concerning. What is I sway the decision and then she has a problem?


stumbler
3 years ago

@mumofmser , being a parent is a huge responsibility in so many ways. And, being a parent, we have to make judgements that have an impact on the way our children develop and how they become adults.

This is just another one of those decisions, which you are going to have to help your daughter make, with a view to giving her the best outcome.

You may find this blog useful in your deliberations:-

http://multiple-sclerosis-research.blogspot.com/

Here you have a blog from learned and respected professionals, which will give their views on developments and treatments in the MS world. It might help you with these decisions.


Anonymous
3 years ago

I will play devil’s advocate and say what if you go with none or a weaker DMT and God forbid your daughter has a relapse that leaves permanent severe damage? I have a special needs son about that age so have made lots of tough decisions for his entire life. It goes with the territory. You can only do your best. The choice you face is clear for me. I would not hesitate to treat him with the only DMT where 80% of the patients did not have any further disease activity and needed no further treatment for the 5 years that the trial lasted and it is suggested for much longer! I have struggled mightily with an aggressive case of MS myself and I would not wish it on anyone, much less my son! All of the more effective DMTs carry significant risks. I know because I took them all and have read all of the warnings and signed all of the liability waivers. The ITP risk you mentioned was relatively low and now as result of the trials is screened for and can be successfully treated if in the rare chance it is detected. The thyroid risks are a higher percentage, but easily detected and managed with commonly taken meds. I would gladly trade the long list of symptom management drugs and my DMT for 1 thyroid pill a day. A lemtrada research investigator wrote that MS patients have 50% higher thyroid risks even without Lemtrada. He wrote in the trials that the comparator drug Rebif seemed like a placebo when compared to lemtrada and that it is the closest thing we will see to a cure for the next 10 years. I would be so thankful to live in a country where Lemtrada is available as a first line treatment which is when it can be most effective for a newly DX’d patient. It has been made available just recently here in the States as a third line therapy under the strict control of a risk mitigation program. And yes, I am signed up to receive Lemtrada myself. I am not the best fit for the drug, but I have read enough and talked with enough medical professionals who are also patients to believe it is my best chance at a better quality of life. I hope you were not offended by any of this; but I am passionate about warning others what a tortuous disease MS can be and aggressive treatment is called for unless you see something better on the horizon. For me, the choice is clear. And it is not a future of DMTs with escalating efficacy only slowing the progression of this monstrous disease!


Anonymous
3 years ago

@mumofmser, You are the first person at this or any other blog that I have visited that has made any sort of comparison between cancer and MS even indirectly as a result of your job. I think it is a fair comparison.

I have often thought about the fact that my first Neurologist said that he had good news and bad news. The good news was that I did not have cancer (we all have a pretty good idea how serious that is). The bad news, of course, was I had MS. He gave me the obligatory pamphlets describing essentially a slow not so dangerous disease that might leave a few people in a wheelchair down the road. It then explained a progressive approach to treating it as it worsened. It sounded right having just fallen into the ranks of MSers. After a quick study, I rejected the progressive therapy approach and started with tysabri and got a taste once a month at the IV suite who some of my peers were and what they suffered from. That along eith further research and personal encounters convinced me to over the years take the most effective DMTs as they became available and continued worsening along the way. Pain became my main complaint. As it turns out, more than 50% of MSers report severe pain. My pain was/is triggered by weather changes. Now my pain is present 24 hours a day and made significantly worse by weather changes even while taking several different pain meds including several specifically designed for nerve pain. Nerve pain can be anything from numbness, to that “run over by a truck feeling”, to sharp stabbing pains (with emphasis on sharp!), to lightning like shocks that can hit large sections of your body at once, to skin being ripped off feelings. Throw in all of the other possible symptoms of MS that can affect your vision, balance, strength, bodily functions, did I forget memory?, social inhibition, anxiety, depression, and the fear that yet another symptom will pop up and may or may not go away. SOUNDS LIKE A SERIOUS DISEASE TO ME! But for some reason we are counseled to go easy when selecting a treatment! I SAY NUKE IT!!


finchy
3 years ago

I am humbled by the quality of the discussion from everyone in this post. I can imagine that dealing with decision-making as a parent must be very hard. I think what came over from the discussion was that the more effective drugs tend to carry more risks with them. This really does present difficulties. Many thanks for everyone’s contribution and I hope that this discussion will continue, because I think it’s something that we can all benefit from in sharing our experiences on social media.


Anonymous
3 years ago

@finchy Enjoyed your blog. You write very well 🙂
My two pence worth is this:

MS is a high risk disease end of. Remove DMT’s from the equation and you are higher risk of losing your health, independence, livelihood and relationships much sooner. The statistics are there to find and they are stark. Yes its unpredictable and some people might be ok in 20 years time but they will not be the majority.

Fear is only a problem if its disproportionate to the situation. My fear has motivated me to find out as much as I can about the disease, ask questions and challenge the views of my own MS team. As a result I have gained treatment sooner, got on the higher efficacy drugs sooner and hopefully gained myself some time. Looking back my fear has been my protector.

At the moment I am well. I have no symptoms and no disability yet I have pushed for the higher efficacy and with it the higher risk drugs. Some would say I am taking too big a risk as I’m so well now, but I’m looking at the bigger picture and as such I’m prepared to roll the dice.

I’ve never the understood the lack of urgency in treating MS.


Anonymous
3 years ago

@sandwich, I have actually tired myself out with writing, but your post demanded a short 🙂 reply. You are right! The willful complacency is amazing! I honestly believe that most MSers and definitely the public is totally illiterate when it comes to MS and what it can do to you! I think it may be born from an era before now when there was literally nothing that could be done other than dabbling around the edges treating the symptoms and you lived your life and hoped for the best. A lot of neurological diseases are end of life diseases. But not MS! Not now! There are now several effective DMTs that can help delay the ultimate outcome which will vary from patient to patient until something newer and more effective is discovered. I took the same approach as you and once DX’d, took the most effective DMTs including participating in a clinical trial to get a head start. I knew that I had a very aggressive case;however, which has given me several disabling symptoms, pain being the chief one that changed everything. People do not realize that an estimated 50% of patients suffer from severe pain at some point during the disease process. It used to be buried (not spoken about) and even my neurologist conceded that MS pain is very difficult to control. I will not bore you by discussing the litany of pain medications and combinations I have tried to do a very poor job in controlling the pain. Uncontrolled MS is a very ugly disease that can disable you in a number of ways, steal your independence and livelihood, ruin your relationships and yes even kill you. But it will be reported that the patient died with MS not because of MS. I know all of this not only by hearing or reading about it, but by living it. You are very smart to fear this disease and continually seek the best treatments and education about what treatments are in the pipeline.


Anonymous
3 years ago

We must be risk takers @mbrsinc 🙂

Cant say I ever viewed myself as one before but I value my autonomy and plan to be proactive in maintaining it for as long as possible.

MS is down played there’s no doubt about that in my mind.
For instance I fail to see the logic with all the worry of Lemtrada causing thyroid problems and being on medication the rest of one’s life. I’m going to be on medication the rest of my life with or without thyroid issues as when the DMT’s stop working it will be symptom management meds. Yet the risks associated with DMT’s are reinforced much more than the disease itself.

The EDS scale referred to in some research puts QOL at 8 and 9 as worth than death. I’m inclined to agree. People need to read up and wise up to the disease asap.

I hope you manage to get a handle on that pain.


Anonymous
3 years ago

Yes we are risk takers for sure! That is also a symptom of MS. 🙂 I was a SW engineer before MS who started my own tech biz. I now day trade the stock market. I definitely am a risk taker! I did not even make the point and it’s a big one, that MS is a very lucrative business. Throw that into the mix and you have a very dynamic situation with counter intuitive decisions being made.I don’t know how that plays outside the US, but here, it drives everything. Are you familiar with the movie “The Fugitive”?


Anonymous
3 years ago

Not watched it no but follow Kamikaze which makes for interesting reading at the moment.


mumofmser
3 years ago

I am really grateful to all contributors today. Its really made me think about my role in helping my daughter get the best treatment.Knowledge is power and I am her advocate in all of this.


Anonymous
3 years ago

@mumofmser Knowledge is powerful. Barts Blog as mentioned above is a very good source of information. I’ve found the MS Trust very helpful too.

I wish your daughter the very best with her treatment whatever that may be. It sounds like you have a good neuro team around you 🙂


tracyd
3 years ago

They say what doesn’t kill you makes you stronger

A person with MS faces that challenge every day. It isn’t killing us but it weakens us physically and cognitively,

Our sense of self sometimes quite literally is eroded; depending upon the level of disability MS causes your ability to contribute can be reduced to the status of ‘unemployable’ or we can find ourselves gradually reducing our hours and responsibilities in relation to our illness progression. No matter how much you want to work employers need people who are going to be fit and healthy and reliable because they need to be able to depend on the employee as much as the employee depends on the wages – a vicious circle where it’s difficult to apportion blame or responsibility to anything other than the MonSter but can be catastrophic for the MS suffer regardless.

Depending upon how long you’ve been diagnosed and whether your RRMS, SPMS or PPMS your options can be vast (RRMS) or minimal (SP and PP)

You have options with RRMS,
– Do you treat the symptoms and go for a DMD that will slow relapsing and in turn be less intrusive to your life. This option allows you to work and even hide that you have the condition. So it can have some nasty even fatal side effects but it’s one in thousands and it’s worth the risk?
– Do you go on the war path, get the biggest baddest weapon you can get your hands on and deliberately decimate your immune system which can also have nasty side effects but offers the hope of halting the tide, potentially repair of some damage. But what of life without an immune system??? Do you become a hermit only talk to people through a mask and you didn’t really want to holiday in Vietnam or Africa anyway did you? And what if you get something really bad that’s not related to MS but your body can’t fight it because of what you’ve done to it?

With SP and PP MS the options are disappointingly less positive (assuming you view the two above as ‘the glad game’)

There’s diet, exercise and treating the symptoms and the ever present promises of new ground breaking research and treatments, join the trials be part of the next miracle – unless of course you get to be the control and have the placebo – now you’re not being treated with anything at all ARRGGHHH

In everyone’s case these things will have different benefits and consequences. If you have kids who let’s face it are little plague monsters your priorities are going to be towards being able to always be there and care for them. You can’t shut them in the cupboard under the stairs like Harry Potter every time one gets a sniffle so they can’t infect you because your immune system has been put in the deep freeze for 2 years it’s just not practical.

If you have a job which requires you to interact with the many people again an aggressive treatment might just not be something you can risk, your employer needs you there front and centre, you need the job to pay the bills how do you balance the risk from the side effects against your ability to earn?

How long have you been diagnosed, how bad has it got? An aggressive treatment might halt the tide but you don’t get some of the reported healing because the scarring is no longer repairable 2 years down the line you could have had something that held the MonSter from the door and also allowed you to have exotic holidays and enjoy the company of plague carrying people and live life to the max
AARRGGHHHHH 🙁

There is no right answer for everyone, it’s always going to have to be a personal decision.
For myself, this is a WAR – Tracy v MS

DMT yes please. I have chosen my sword – Lemtrada the biggest baddest of them all and I’m taking the fight to the MonSter I’m going to kick it’s ass and send it snivelling home to it’s mummy and next year when it thinks it’s safe to come out I’m going to do the same thing again to it. I will repeat this year on year for the rest of my life if I have to because I am not prepared to allow it to take any more from me. I’ve drawn the line in the sand of what I am prepared to live with for the rest of my life and it goes no further. When something more effective comes along I’ll be doing the mental maths of that v’s what I’m currently fighting with, what price am I prepared for my body to pay to maintain the lead in the battle!
I don’t have kids, my husband bless him is mostly germ free and when he does get something he goes to bed in the spare room and sleeps until he feels better. I have a great employer who is supporting me and a role I can do working from home if and when I need to. I’m VERY LUCKY and I know that and appreciate it very much.

On the sliding scale this works for me. People suggest I’m jumping the gun to use the big bad treatment when I don’t need to put myself through that ‘yet’ because ‘it’s not bad enough’ and ‘I look so well’ 🙁 that’s their view point, it’s their right to have that view, I hope if they were in the same position and faced with the same choices that they would be in a position to make their own choice and not need to justify or defend it.


Anonymous
3 years ago

I had my Lemtrada screening appointment yesterday. The nurse spent close to an hour explaining the risks and side effects of the drug. A shiny booklet and medical alert card was given to me which also spell out the risks.

I commented if people were given the risks and side effects of MS in such a comprehensive manner, I’d bet those same people would be signing up for the drug 🙂


Anonymous
3 years ago

@sandwich, That’s AWESOME! What you said was perfect! They act as if there are no consequences for having MS. I was reading some FB comments about US patients just getting lem. We have fought and clamored for lemtrada because we have seen the results. We have heard the testimonials. We have lived and fought the MS monster. We might know best! Very happy for you! You are very smart!


Anonymous
3 years ago

I don’t know, I guess its hard to call and get the balance right as MS is so unpredictable, plus not everyone wants to know everything straight away or even at all. The difference is no one is responsible for giving you MS but a DMT is an option which can cause additional problems. I think its right the risks of DMT’s are drummed into people, but I feel the risks of MS should be shared in the same way.


mumofmser
3 years ago

Fantastic news !! My daughter aged 17 is 3 weeks since diagnosis and still waiting on first appointment for DMT. I thought it would happen really quickly ??


Anonymous
3 years ago

@mumofmser

Its not unusual to be waiting some time unfortunately. You could give them a call and try to push things along a bit. At 17 is she under a paediatrician?


mumofmser
3 years ago

No thank god they missed it 2 years ago no investigations even though I raised it. under adult care now. Luckily live near specialist centre. I am of the opinion to lemtrada this asap.


Anonymous
3 years ago

Sandwich, I view MS as a bomb waiting to go off! There is NO way for anybody to predict what damage will occur when it does go off. I think it is ok to listen to warnings from the local neurologist. They should have your best interest at heart and not every patient is informed unfortunately. But we are the ones walking around with the bomb. Highly trained specialists from Cambridge and around the world have studied lemtrada and it’s effect on bombs for decades now. Specialists that sit on world regulatory boards have reviewed the data more thoroughly I hope than the local neurologist. They have approved it’s use, many as a first line therapy, in more than 40 countries. There should be much more weight placed on their opinions than the neurologist sitting across the room from you. I trust their judgement for disarming the bomb more than the local opinion. That’s just me! 🙂


mumofmser
3 years ago

I am so glad to be hearing this as a parent I do feel I am going down the right treatment path ….if they don’t give her lemtrada they have a fight on their hands !!


finchy
3 years ago

I wish my mum had been around to fight my battles! You’re doing a good job just by being informed. I’m sure your consultant will give you the very best advice.


Anonymous
3 years ago

I’m not!


mumofmser
3 years ago

Haha @mbrsinc each to their own. No doubt I will be the annoying mother at times but we are in this together. Going to ring up on Tuesday and chase her appointment. Feel like we are in limbo. Happy Easter to you all x


steviet
3 years ago

Hi all – this is a really thought provoking conversation. I’m preparing an article for the MS Trust newsletter about the early treatment debate and I was wondering if @sandwich @tracyd or any of the anon contributors to this thread might be willing to be interviewed or to answer some questions via email around how they came across the idea of early, “aggressive” treatment and how they considered the risks etc? Reply here or to [email protected] if you’re interested. Mods: apologies if this isn’t good forum etiquette!


tracyd
3 years ago

@steviet – you have email coming from a Vodafone email addy xx


stumbler
3 years ago

@steviet , I can’t see a problem with that post – we’re all on the same side. 😉


steviet
3 years ago

Thanks very much for your help folks – hopefully we can share some of the knowledge and wisdom from this forum with the wider MS community.


zulfihan
3 years ago


Professors from the Institute of neurology argue the same issue here very enlightening; worth watching.
Key issue early and agressive treatment…


Anonymous
3 years ago

Thanks @zulfihan.
I can’t think of another critical illness where the advice is to wait and see. What’s to gain from such approach is beyond me.


Anonymous
3 years ago

Interesting video @zulfihan — i am glad i wasn’t there as i had to pause it twice to run to the loo lol


mumofmser
3 years ago

Hi everyone well my daughter 17 just recently diagnosed in March has finally been offered tecfidera or lemtrada. What a decision. Multiple lesions on scan and just had contrast scan today to see if more active disease. The consultant is siding towards lemtrada as am I but my daughter is thinking tecfidera based on her summer plans I.e can’t go to Leeds festival with no immune system. I am so struggling with this, I can’t force her but making decisions based on here and now bothers me but so do the what is of lemtrada. This is hard enough when you are the adult having the drug but as a parent it so difficult. Any thoughts? The u tube video was very informative but still no answers. Probably because everyone is unique !!


tracyd
3 years ago

@mumofmser

It has to be her choice to make. Leeds has been and will go on for many years, tec may well be her choice for now she has a life to live and she is so very young.

It’s hard to imagine life as it can be in the later stages of MS if you have an MS therapy centre near you please go there and see how it can be. It’s not just whizzing around in an electric chair and carrying on regardless it’s frightening and not fun.

Your daughter has to weight up short and long term and draw up some lists it’s hard for someone her age, and tec may allow her to have her fun and then do something more drastic. I would never push someone in the direction of any DMT it’s a personal choice we all have to make but learning about them all is the best advice I can give xx


mumofmser
3 years ago

@tracy d thank you for your thoughts. I know it has to be her choice but even she has said she isn’t ready for this sort of responsibility. She has only met one person with MS to talk to and they are well. She has chosen to just pretend its not happening and who can blame her. There is the possibility of tecfidera for now and having the lemtrada after xmas. I guess we have to see what her latest scan shows and take it from there.

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