Last reply 1 week ago
What to do? To DMT or not? Which DMT?

Hi Everyone,

So I’ve posted on here once before and haven’t been very active on here since so my apologies for that and thank you to everyone that replied to me. I think I’ve been trying to ignore the possible (inevitable) diagnosis heading my way and trying to live life normally while I can. However, that kind of came to a halt yesterday after a first meeting with the MS nurse which was arranged by my neurologist.

I was awaiting lumbar puncture results and also the outcome of a second MRI scan with gadolinium enhancing dye. The upshot is my MRI had not changed and the lesions that are already there (which are described as ‘high in number’) were not enhanced. There were no T1 abnormalities and my spinal cord was normal. My neurofilament levels are normal for my age and my spinal fluid was oligoclonal band negative. Despite all this, the expert radiologist thought the lesions ‘looked inflammatory’ and given my family history with MS and my previous symptoms of numbeness in hands and feet this year, and possible loss of balance last year, they have suggested that I either have Relapsing MS (if they associate both possible symptoms with the lesions), or if they only associate the more recent numbeness then I have a clincally isolated syndrome with a high chance of going on to develop MS. Either way it sucks.

They are now offering me treatment options and I have no idea what route to go down. My options are:

1. Abstain from DMT and focus on diet and lifestyle and get rescanned in 3-6 months to look for changes. I’ve adopted the Overcoming MS diet and no longer eat meat, diary eggs or refined sugar and manage my saturated fat intake to no more than 15g daily. I am also taking Vitamin D, B12 and Omega 3 supplements. Does anyone have feedback on focusing on lifestyle changes instead of taking drugs? My MS nurse was very negative about the Overcoming MS diet which I found very disheartening as by adopting it I felt I had taken some control back. I would also be interested in any guidance on the amount of Omega 3 I should be taking? The Overcoming MS book suggests it needs to be ‘high dose’ but doesn’t specify what that level is?

2. Start a DMT. I literally hate the idea of being on medication for the rest of my life but I realise this is something I’m going to have to get over. I’m frustrated that the decision seems to be a pay-off between possibly improving prognosis for MS and developing other illness as a result of the meds. Why is the outlook so bloody shit? Anyway, in terms of my options, they have given me three options and I’m looking for advice on what people would recommend?

– Beta Interferons; I think I’ve already ruled this out as it’s the least effective of the three options they are offering me.

– Dimethyl Fumerate (Tecfidera); this seems to be my neurologist’s preferred option, I think because it’s reversible, unlike option 3. What are people’s experiences on this? I’m worried about getting depressed (more than I am)

– Alemtuzumab (Lemtrada) this treatment sounds the most effective but I do think, if I’m putting my body through this process, why wouldn’t I go further and seek out stem cell transplant as part of the re-building of the immune system process? This treatment seems like half the job? What are people’s experiences of this? The MS nurse warned me that what ever it does to my immune system is irreversible which made it sound more scary than the other options? I know I wouldn’t get the stem cell treatment on the NHS anytime soon as I need to have to failed on two DMT’s before being considered but I did wonder about going private – has anyone done this?

Other things to know about me, I’m 37 and single and want(ed) to have children. Last year, before I knew all about this I froze some of my eggs and was considering using them to have a child alone. This was the plan but now I’m not so sure. Getting pregnant will affect treatment options but also, should I even consider having a child if I have MS?

Anyway, any advice/guidance is much appreciated as I need to make a decision. At present I’ve held off making a decision and will go back in a few weeks to discuss it again.

Apologies if I have overshared – I feel like I have but I just need some advice.
Thanks for reading all this
Lisa

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bradydenise
2 weeks ago

Hey I’m sorry but I can’t advise you on those treatments as I’ve n okay taken any of them I was on betaferon w which is an injection every second day. I really hated doing them and I took for 5 years and got cellulitus on my stomach which was very painful. I was also on gillenya which was brilliant 1 tablet everyday n got bloods done every 3months n then 6months at a time. I did fantastic on it and felt great. I had a bad relapse last February n ended up in hospital for 1 month. I started back on gillenya n got pregnant I had a beautiful baby boy last November. So if u want a baby it’s no problem with ms all I will say is that it’s hard work especially if u want to do it alone. U will definitely need help and support after. As soon as you have the baby they are keen to get u back on meds so no breastfeeding.
I’m now on tysabri it’s an infusion done every 28days in the hospital. There are side affects but it’s been going well so far. I’m back to my neurologist on the 18th this month I’ve been on it since February.
Hopes this helps a little n I’m very interested in stem cell treatment so if anyone has any advice that would be great x


jadeshelley
2 weeks ago

When it comes to choosing a DMT unfortunately no one can tell you which one to choose. I asked this question before I started on my copaxone over a month ago, as like you I wanted someone to answer it for me, but it all comes down to which one you think would be more suitable to you. I agree none are appealing and I took it hard when I had to make this choice as I didn’t want to be on medication for the rest of my life either/ nor have MS 🙂 every day is a battle of will when I think about my life now, but i have no choice but to accept what i have been dealt with and deal with it in my own way, wether that means taking a DMT or trying out with the diet etc. How is the overcoming MS diet working out? I have the book and have been reading it but the diet seemed like I would be punishing myself of the good bits haha. I wish you the best with your decision, and everyone on here has some of their own ways and words of wisdom to try and help you out and make some things easier to handle. 🙂 xx


billkittens
2 weeks ago

Lisa, you are remarkably lucid in your thoughts… my father is in an identical position to your mother and your situation really rings home to me… your obvious strength in character will carry you far on the uncertain road ahead….

Don’t overthink, be grateful for the blessings you got and be happy… nobody knows the future…
Alex


simone2
2 weeks ago

Hi Lisa, I was taking DMTs but I had terrible side affects, I felt so ill, so after lots of hard thinking I stopped, that was 7 years ago,for me it was the right decision,when I was first diagnosed I brought a book by Judy Graham MS NATURALLY it really helped me with diet and lots of great advice I follow the best bet diet and take lots of supplements, if I stray off the diet my symptoms are much worse and in 7 years I am still walking around and riding my horse.
I have one daughter and I do worry about her getting MS but theres a strong chance she won’t get it, you have lots hard decisions to make but whatever ones you make they will be the right ones for you.

Sue


stumbler
2 weeks ago

@lisa_mills , wow, your brain was working overtime last night. But, it was probably very therapeutic to get all your thoughts into writing and you probably slept well because of it.

Anyway, a diagnosis of MS, or CIS, is indeed a concern and your questions are understandable. So, in your order :-

1. The feeling of wholesale lifestyle changes is that they do have a positive effect. This will make you feel healthier, but the jury is still out on whether it positively effects the course of your MS. No-one in the medical profession will recommend it as there is only “anecdotal evidence” that it has any impact. They like to see properly controlled Clinical trial evidence and that’s not going to happen!

The omega 3 question is answered here :-

https://overcomingms.org/ms-a-to-z/faqs/diet/confused-much-omega-3-take-different-strengths-fish-oil-cant-seem-find-exactly-much-epadha-take/

It is an option for you. If you feel strongly about this, then you have to try it and see how it goes. It will either work for you, which will be great, or your MS will progress and you will need to reconsider the DMT route.

2. There is now a range of DMTs available, ranging from injectables, oral tablets, infusions and inductions. You seem to have a good understanding of the pros and cons of these, but you will find further detail of the options here :-

https://support.mstrust.org.uk/file/store-pdfs/MS-Decisions-ALL.pdf

and a comparison tool here, which may help :-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

There have been numerous posts about member’s experiences of most treatments. You can use the Forum Search function (magnifying glass, top left) to locate them.

As for your life’s aspirations, don’t let MS stop them. They are still achievable. Don’t live the rest of your life regretting what-ifs.


lightning87
2 weeks ago

Making the decision on which DMT does seem like a scary decision. I wanted someone to tell me which one to go for rather than decide myself.

In the end, I decided on Tecfidera which I’ll start on 23rd Sept. At least if it doesn’t work, I can then try something else as like you say, it does come out your system.

I’ve heard good things about Tysabri but don’t have personal experience.

I have started the OMS book, I am unsure how cutting out dairy as I love my coffee too much. I have quit smoking though and take Omega 3, B12 and Vitamin D. I am still to finish the book but I will start to exercise/meditate frequently. I am planning on a lifestyle change after my holiday to Turkey this month. For me, I would prefer to be on treatment so I didn’t sit wondering ‘what if’ later down the line but it is a personal choice.

And many people have babies after being diagnosed with MS. Don’t let it control your life xx


cameron
2 weeks ago

@stumbler says it all in a nutshell. My view is that it’s not an ‘either – or’ situation. Untreated (i.e. unmedicated) MS will get worse- there’s not much argument about that,unless you are one of a tiny minority of people whose MS doesn’t appear to progress at all. For most of us, though, it does and it will. The drugs are scary, yes! But the stronger the meds, the more rigorously you’ll be monitored. You won’t be on your own, there will be regular checks to spot any possible issues and the drugs have been around long enough for those issues to be well known and quickly diagnosed. The fact that you’ll always be in contact with a medical professional (e.g. MS nurse) should in itself be reassuring. Up to now,as a newly-diagnosed patient, you’ve been isolated and that in itself is a problem. Just you and Dr Google to make big decisions. Re: lifestyle – yes, it has to change. Whether that’s through OMS is your choice, as is going gluten/dairy free etc. However you achieve it, you need to be as healthy, well-slept and stress-free as is humanly possible. Be hopeful – this forum is full of people who have come through these big questions and are living well. xx


vixen
2 weeks ago

Hello @lisa_mills. There are very many great annoyances around a diagnosis of MS. One, is that no two cases are the same; symptoms vary, progression rates are unpredictable, and medications have different impacts and effects on different people. It’s a true bummer. However, there are positives! Yes, really. A diagnosis tends to make most people undergo a bit of an overhaul. With diet, with lifestyle, with hope, dreams and plans. There is also great hope pinned on ongoing research developments over the next 10 years, with pockets of promise for all types of MS. And of course, there are communities like this where, despite our medical and bodily differences, we are all bonded by one common factor. Most importantly, we all have a pretty good idea of how other posters are feeling. So, you’re not alone. Your life might not be panning out as expected, but it’s still panning out at least! Stay strong x


mermaidia11
2 weeks ago

What a mare! Greetings luscious locked @lisa_mills

I think the first question is what was your lumbar puncture results? In English- was there anything in your spinal fluid?
As far as my neurologists n ms nurse said to me all those years ago –
The lumbar puncture is the most telling test, after symptoms.
You can have lesions on your brain, without having any nasty disease, autopsies have proven this. Many a person has been found to have lesions, but no active MS.ever.
It is protein from inflamed lesion that is detected in the lumbar puncture- so if you have any inflammation or have had inflammation in your brain then the protein would be detected.

The lovely Egyptian neurologist I saw (knowing I had active ms because there was a lot protein in my LP and I’d been on a stroke ward for two weeks.
(I was that bad, they thought I’d had a stroke- I was 20 now 44) my lovely Egyptian neurologist said “Dear, you are young, with your whole life ahead of you. Forget all of this and live your life to the full and if you get ms, well we will deal with it then”

. Despite that awful first attack, which left me half blind and in a wheelchair for 6 months. It was 20 years before I started getting troublesome symptoms and none were ever the magnitude of the first – and I know a lot like me. Go figure.

And what symptoms have you had so far, and were they unbearable? Are you having symptoms now? Are you suffering? Is it bearable?

I’m not very popular here because I call a spade a spade, or think outside the box/offer a different perspective – whichever way you want to look at it?!

Like for example, if u were my real life friend I’d say:

Forget the DMDs!! – unless u are ok with being unwell for extended periods of time and spending a lot of time speaking to drs and nurses.
For the rest of your life.

Don’t be persuaded to get on the MS carousel, and give up your dream of having a baby; it must be important to you, or you wouldn’t have frozen your eggs!

If you aren’t suffering now, then chances are you won’t in ten years, and you only need five of those for a little person. After that, they not as dependant and are at school. Do u really think that with a ultra healthy lifestyle and lots of exercise, you are going to get too sick to care for yourself or a babe in the space of five years? MS is a slower beast than that.
And jk Rowling mum had MS and it didn’t do her any harm. Don’t let fear be your guide…

And another thought. Do u know how much money you are worth to the industry on meds, as opposed to not?

Sorry if this is unpopular but I would never advise anyone to take a dmd when they are well, or compromise having a baby.

If you have MS then one day in the very distant future you will become secondary progressive. Because there is no cure, a dmd may or may not extend its onset if you have got it, but it will not stop it.

My view? It’s out of the potential frying pan into the actual fire if you choose to take one. They all have side effects, some permanent.

Have that baby and enjoy 9m of a boosted immune system. It really is ace to feel so good

Is my counsel chick seein as u asked

Love. Lite and Good luck x


californiadreamin
2 weeks ago

@lisa_mills My wife was diagnosed about 2 years ago and had similar choices and we choose tecfidera and OMS as a lifestyle. So far we have no regrets except for a horrible period of several weeks with tecfidera were she almost gave up. However, now she doesnt even remember almost if she has taken it because there is no effects at all that she can feel.

The prevalent school of thought is there are two parts of MS and they both are making you worse. The inflammatory portion which drugs can help with and the non inflammatory part which seems to be progression that gets worse slowly and DMT’s arent likely helping with that part. Our belief and hope (based on reasonable data if you read the OMS book) is that diet, exercise, stress management all help particularly well with the non inflammatory part.

I would recommend doing a couple things:

Read the OMS book (there are others but that book I think at least presents a balanced view of MS etc).

What this video from the rocky mountain ms center. A very reputable center (we are in the US) Its three hours long, but its full of so much information that you wont get with individual appointments. They really know the latest as far as the scientific community goes.

Too much information can be overwhelming, but both of the above present things in a way that you can absorb and but are full of hope.

Two years into MS and my wife and I have both been working on our fitness and lifestyle. we are fitter, faster, stronger then we have ever been in our life so far. It can change in a moment of course, but its a far cry from where i thought we could be two years ago.

wishing you all the best.


gp14
1 week ago

I was diagnosed with RRMS last October and decided not to go on a DMT. I changed my diet, (no meat and very low saturated fat), go to the gym 5 times a week to strength train and take cod liver oil and 5000iu vitamin D daily. I also take iron tablets for fatigue which has helped as my iron levels were on the lower end. So far so good, no need for steroids since last October.

When my neurologist first warned me of MS I was 21 and no where near a diagnosis. He just advised to take cod liver oil and vitamin d daily. Of course I did not listen to his advice when I didn’t feel sick at all.

The changes I’ve made have really helped. My MS nurse did not pressure me into a DMT but recommended Tecfidera. She recommend the OMS diet and said many patients of hers decide not to take medication for MS.

At first, I suffered from anxiety and low mood worrying about MS and my future. Now I don’t worry about it.

The changes I’ve made have really helped. Don’t let anyone pressure you into a DMT, it’s your choice what you decide to do.

Also, I agree with @mermaidia11 to her point on the pharma industry. Another reason I will not go on a DMT.


grandma
1 week ago

I was dxd 25 years ago. Was on Beta-Inferon for 23 years but there was no choice then, it was the wonderdrug at the time and we had to fight NICE to get it because of the cost. I was on the original trial and was given it for a long time for free as a thank you from the drug company. Was told rrms would become spms within 10-15 yrs, it took 23 years so I’m not complaining. Was put on Tecfidera at the start of this year as the neuros think the rrms is becoming spms. I used to have 2/3 relapses a year requiring steroid treatment to save my sight. We’re in mid September and nothing so far this year so all seems to be going well. After 23 years of sticking a big needle in myself once a week taking a tablet twice a day is a joy so no complaints again. Don’t be backwards in coming forward. I’m a grandma, have 2 dogs, lead a very full life (with my mobility scooter and electric wheelchair) there is nothing we can’t do (with a little help from our friends to quote the Beatles!) I Caravan alone, go out, go to the theatre, go on trains, buses etc., so don’t worry about the future, stress is one of the worst things for ms!😍

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