Hello all,
I have recently been told that I will need to make a decision about starting a treatment soon.
As my MS has been mild and not showing a lot of lesions for 5 years now, I have decided not to start treatment until later on. I am at a stage now that I have 2 new (very small) lesions so my neurologist has put the options of treatment on the table again. As I haven’t displayed new symptoms relating those lesions , he says there is no rush but need to think about it.
I am quite afraid of starting a treatment (which involves so much decision making but also a harsh reality check!) and now feeling guilty that I should have started it earlier.
What are you guys thoughts about what drugs to consider or if I should consider it at all?
Best to be informed by the facts rather than the experience of any individual. The websites of the MS Society and the MS Trust are both well researched and well written. They have tools to tell you of your valid choices. You should then be able to have an informed discussion with your MS Nurse or consultant.
I look at the process as a bet where the possible side effects are the stake and the benefits are the winnings. It is unfortunate that there are no certainties with MS.
Don’t waste time of energy worrying about the past. The future is what’s to play for. It’s good that your MS has politely hinted at its intentions rather than barging in causing mayhem and turning your life and your plans upside down. The nicest kind of reminder comes before real harm is done, not after.
Good luck with your decision.
For me choosing a treatment was pretty simple for me as was pretty much only one choice for me which was Ocrevus by infusion. But then they give you your choices take some time to think even do your own research on asking people who have been on it.
Not yet, I only looked at online ressources so far but I will book an appointment with the MS nurses to discuss this further.
I find the process daunting and scary - probably more psychologically as this makes me confront the reality after a few years of being able to tolerate the symptoms and act like everything was normal. I know I am incredibly lucky to have been in this position as I haven’t experienced strong relapses since my diagnosis.
Thank you everyone for your insight and help. It’s really appreciated.
When I was diagnosed long ago, we didn’t have these options so MS relapses let rip and did a whole load of damage. You now have the chance to insure against this happening to you, please don’t leave it too late. Of course it is daunting amd scary, the decision you are now faced with brings it all home that your MS is real. Treatments for RRMS are improving all the time, we are incredibly lucky to have them. They are for the future, not for what has already happened.
Best of luck
Hi,
It is a really daunting decision.
You’ve probably realised that there is a bit of a trade-off between efficacy (how well the drugs work to control MS) and side effects. The more effective drugs do tend to come with more side effects.
There seem to be two approaches to treatment out there.
One is the “escalation” approach. This means that if your MS seems “mild”, you take a lower efficacy drug with fewer side effects. If that doesn’t work, you step up to the next level, and so on.
However, there is another approach which reverses this: Regardless of whether your MS seems “mild” or not, you go in with a highly effective drug first, hit it hard at the outset. As if you were treating a cancer.
Why would a person with very mild MS take a “tough” drug? Well, because MS is a progressive condition. The expectation is that we are going to get worse. That’s an awful thing to take in, I know. But it means that when you choose a DMT, you are not just thinking about your symptoms now, but about your future self in 20 or 30 years time. And there does seem to be some evidence that starting with a more effective drug earlier means you do better in the long term.
To help me make this decision, I looked at the things MS might do to me - in terms of my walking, bladder control, thinking speed, fatigue etc. Then I looked at the side effects of the drugs. And I decided a high efficacy treatment to control my MS was more important than the side effects - even though my MS is currently mild.
I went with Kesimpta, because it’s both high efficacy and convenient to use. So far I’ve had almost no side effects.
In choosing DMTs, websites like the MS Society or MS Trust are helpful. If you Google “MS Selfie Info Cards” I think you can also find a new set of cards on MS comparing different treatments. Some websites let you decide what your main priorities are and will give you a short list of DMTs on that basis. You might make a few notes from all these sources and take those back to your neurologist? If you let your neurologist know what your priorities are, they might give you more guidance.
Forget about feeling guilty! It sounds like so far your MS has been quite slow developing, and that’s great. Luck plays a big role in MS outcomes. But it is a progressive condition - and one you can do something about. You now have a chance to read up, choose a DMT and know you’ve done the everything you could.
Thank you so much for your message Leonora! I haven’t thought of the two approaches and will definitely give it a good thinking over as well as taking notes!
It’s research time for me!
Thank you also for the invaluable support you are showing. I am so grateful to have found people that fully understand what it means to live with MS.
I’m like you and don’t have obvious physical symptom’s ( bad memory) I was diagnosed 2yrs ago with very little symptoms but I started Kesimpta 6mths ago which I injected every month. For a start the words injection sounded terrible, it’s not, just a pen with the tiniest needle you can’t see and doesn’t hurt at all. It was easy! I was tired the first few times of taking it but fine now. I feel a lot less tired and have had no side effects. If it stops it getting worse it’s a no brainer.
Just getting on with life!
Thank you for your message Lucy. Yes, it all starts to make sense and it helps to hear everyone’s experience.
I will have to make a decision on treatment very soon.
Hi NL. Just answering the final question in your original post ‘ should I consider treatment at all’. As I think everyone else is saying - Absolutely, yes, 100% yes. Any side effects of treatment pale into insignificance compared to the potential, seriously damaging , life changing effects of MS. I say this having seen what MS did to my Aunt in the days before DMTs - decades confined to her house or a nursing home having to be helped to get dressed and eat!
Thank you for your honest post. Yes, you are (and everyone else here in the forum) are 100% right about the treatment response. And I am in the process of doing it.
I have found this very hard because it made me confront the fact that MS is part of my life “for real”. It’s the psychological part that I am struggling a bit with, but I am coming to term with it with all of your wonderful support.
I quite understand the psychological issues. A diagnosis of MS is a real shock and hard to accept. But, Just to add a jokey comment- don’t be like the man who fell from the 100th floor and said ‘well ok so far’ as he passed the 50th floor. And in a more serious vein , don’t be like NASA who insisted that bits of high density foam cladding falling off the shuttle spacecraft was ok until the day a chunk of foam hit the protective wing shields and the Shuttle and all it’s crew burned up on re entering earth’s atmosphere. A collective failure to acknowledge the possibility of the potential for fatal disasters
Seriously, and sorry to be blunt / honest, do start treatment. With treatment you might well be one of the lucky ones who never has to experience any significant symptoms. Delay treatment and you might spend the rest of your life experiencing all sorts of problems and wondering why on Earth you delayed.
I still don’t have my head around it all and find it hard to believe it all. Sadly we don’t have any control on Life. I’m glad I took the one control I have and have found the treatment easy. I do wish I started a few months earlier as I only had two small lesion in June then a 1cm one by August, luckily it’s not affected my mobility (still skiing ) My memory and planning is slightly effected. I know everyone is different but the treatment has had no negative effect only positive. Good luck
It is so hard to decide what to do. I myself am in a similar situation. When I was first diagnosed many years ago my neurologist sent me to a more senior qualified neurologist who advised me not to start dmt as the side effects might be worse than my spms symptoms. Now my spms is not good at all so I will be having this conversation with my neurologist in 2 weeks time. Not sure if I will get the answers I want even then ahh!!!
Good luck to you and best wishes
Yes, this is tough. I think that starting with getting as much information as possible without putting pressure on the choice is the best. Just take things one step at the time!
Good luck and let us know how you are doing.
) My memory and planning is slightly effected. I know everyone is different but the treatment has had no negative effect only positive. Good luck