aldon 15/03/17
Last reply 10 months ago
Im 25, should I be aggressive with DMTs?

Hello

I am 25 years old and have read a few bits about being more aggressive with treatment early on in diagnosis. I was diagnosed April 2016 and have been on copaxone since Aug 2016 however it isn’t working so the doctor wants to put me on Tysabri.

I have been reading a lot about the HSCT stem cell treatment and wonder whether this or Lemtrada is the way to go?
What are other people my age taking?
Has anyone had HSCT? I am hoping to speak to Sheffield about being part of their trial.
What about Lemtrada? what actually happens during and after treatment? is it worth it?

It’s so hard trying to make a decision when all the knowledge you have is based on stuff you read on the internet. I remember how scared I was thinking about Copaxone. Now that seems so silly. For anyone about to start, Copaxone is a pain (injections 3 times a week) but personally, I had no side effects apart from site reactions which were manageable. That and the fact it wasn’t strong enough for me….

The side effects of Tysabri are daunting so I am looking into other options – Lemtrada or HSCT.
Maybe as a young and otherwise healthy 25 year old I should be going at it more aggressively. What do you think?

Thanks!
Alice

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the β€˜x’.


stumbler
11 months ago

@aldon , all MS treatments come with a risk. This risk needs to be weighed up against the risk of what MS could do to you by way of disability.

MS is unpredictable, creating damage that may not be able to be repaired, whereas the risks associated with Disease Modifying Treatments (DMTs) are known risks, where monitoring can mitigate those risks.

So, your considered treatments:-

Tysabri : an ongoing treatment by monthly infusion. Used until the associated risk factors increase too high, then a change of treatment is required.

Lemtrada : a mature treatment, been used for sometime to treat leukaemia under the name Campath. Delivered by 8 infusions, 5 daily in year one and 3 in year two. And that may be all that is required. This treatment may cause a Thyroid problem, which is easily managed.

HSCT : Still in its infancy and not helped by a recent Panorama programme, which highlighted the potential benefits, whilst glossing over the aggressive nature of the required chemotherapy.

These are just my views. I have no personal experience, being SPMS.

Hopefully, there will be more responses with firsthand experiences.


lotusp
11 months ago

Hi
Im in a similar scenario to you, im on Avonex and thinking of changing to something stronger. But im only 22, i want kids and all these things plus the symptoms r quite scary. Itll be interesting to see some responses so thanks for the query!


Anonymous
11 months ago

Hi @aldon I didn’t know whether to post this or not as I know other msers don’t agree with a holistic and natural approach to ms, however, I was diagnosed at 31 (probably had ms for longer) and chose the natural and alternative route to managing it. I’ve been on the Best Bet Diet for 10 years and I do yoga everyday and don’t put any nasties on or in me. I have a 5 year old son and have been relapse free for that period and manage my fatigue being the main symptom. Controversial I know, but I wanted you to know DMT’s are not the only control mechanism and are also unlikely to be discussed by experts. Try and stay positive (easier said than done I know), but ms is different for us all. 🌼


californiadreamin
11 months ago

I think the oral DMT’s are arugably safer and more effective and might be worth at a minimum moving up to (like Tecfidera or possibly Gilenya, though with kids maybe a question mark). My wife is on Tec and our plan is to stay on that a bit with ocrelizumab around the corner is my strong preference over something like Tysabri. Are you JCV positive or negative?

As @vickivictoria said, DMT’s arent the only option and we are also folowing the OMS diet very closely. We personally decided to do both DMT and diet. I believe there is every reason to think that the two will have an additive effect because of the different mechcanisms by which they each work.

I would generally agree with what your Dr says, however he/she can only advise you based on the tools they currently have. Given ocrelizumab is right around the corner, is it worth considering waiting for something like that? Its a bit more research you need to look at, but it could be an option to step up to a stronger oral drug like Tec and see if you can get control with that and diet while you wait for more data.

That said, in your shoes, if I couldnt get the ms activity to stop, I would rachet up quickly.

What is your EDSS score? There are lots of risks with HSCT and they wont neccessarily take you with a score of less then 3 or so. I think its surely and option but again the question is the timing to get the maximum benefit vs the risk. Its getting less risky with each passing year.

Maybe not a super helpful post but there are lots of options. do take some time to think through whats best for you!


spunky
11 months ago

My MS neurologist says he thought Tysabri was the strongest drug on the market at this time. I asked him who he prescribed Lemtrada to (as I thought it was stronger) and he said to young women with active MS that want to get pregnant.

I am not sure if that helps any but I just thought I’d pass on what he shared with me.

A number of neuros suggest hitting ms with the strongest drug possible but here in Canada they like to give you the weakest drug to see if it works first and will move you up from there (not sure if it has to do with the cost of the drug). I prefer the more aggressive approach myself.

Best wishes


aldon
11 months ago

@stumbler I always like reading your comments – you’re so well informed. Thanks for replying to me.

@vickivictoria part of me wants to do it your way. I eat healthy and I have taken up swimming so know I am fit and healthy but I recently had a horrible relapse so I guess this made me want some stronger drugs. I think I may need help with my diet though. Maybe I could be doing it better. Do you have some advice?
I eat all vegetables, nuts/seeds, no meat but I eat a lot of fish. I eat a lot of curry and other spiced foods.
Is there something I should be putting into my diet?

@californiadreamin Thanks for your message. I agree about the timing. Its positive that there are treatments out there being trialed and maybe waiting a year to see what happens would be best. Part of me thinks I should act as quickly as possible and just tackle it aggressively and the other part wishes I could do it with diet and gentler treatments. I don’t want to have something harsher if I can help it.
I am JC positive (low positive) so scared to take Tysabri even though I know I’ll be monitored closely.
I’m unsure of my EDSS score – I haven’t been tested. Having looked at the scale, I fluctuate. I don’t have severe walking problems but I can’t walk very far anymore and my eyes are mostly effected making it hard for me to get around without an eye patch…
Maybe HSCT is extreme. I just don’t want to feel fatigued constantly anymore so guess I’m just thinking of my options to tackle MS

@spunky that does help. I also asked why I was given the option of Tysabri and not Lemtrada and they said it was just as effective. I guess being JC positive I want to see my other options else I’ll be paranoid during the 6 months between blood tests/MRIs especially if I know there are other treatments out there that are the same effectiveness. What treatment do you take, if any?

@lotusp Hope this thread has helped you as it has me. Its good to ask the question as I haven’t seen too many people in their 20s asking about treatments but I have read online that it could be good for people to tackle MS early. So what does that mean? and should we be going for the stronger treatments?
I know with HSCT the criteria is for young people with active MS because they have a better chance of it working. But maybe it is worth holding out and seeing what else comes available…


spunky
11 months ago

@aldon
I am on Aubagio for a year now (no relapses while I have been on it).
I was only offered the first line drugs and my neurologist recommended Aubagio or Copaxone. I chose Aubagio cause I rather deal with temporary hair loss than giving myself a needle everyday.
If I relapse on it I will push for a strong drug but for now Aubagio is working well with few side effects.


californiadreamin
11 months ago

monitoring closely isnt super useful in some ways. Personally i think ocrelizumab might be worth the wait if you can get it soon because it might be better for PML. Surely check with your dr.


Anonymous
11 months ago

Hi @aldon your diet and exercise regime sound great. Are there any food groups you dont eat, such as gluten/dairy/refined sugar/processed food/legumes/alcohol/caffeine? I’m not suggesting you do remove all or any of these but it’s worth having a food diary for a couple of months to see if you feel different after consuming/or not consuming them. I’m ok with the occasional coffee and legumes, but I’m very strict about not eating processed food, refined sugar, dairy and gluten. I should stop drinking, but a glass of red wine is lovely occasionally 🍷. Look up these diets they’re all a bit different, but then so are we and so is ms:

Swank
Best bet diet
Ms diet for women
George Jelinek’s Overcoming MS programme
Paler
Terry Wahls protocol
Mediterranean diet

Good luck and I’m happy to help πŸ˜‰


californiadreamin
11 months ago

sorry meant to say monitoring super closely doesnt help if there isnt much they can do if you get pml and they cant do much.

We dont know what the PML numbers are going to look like for ocrelizumab however there is reason to believe the numbers will be closer to rituximab (based on how it works with cd20). Since rituximab and natalizumab (tysabri) are used in RA it gives some idea of the risk.

http://www.rheumatologynetwork.com/articles/pml-and-rituximab-what-rheumatologists-should-know

“For RA patients treated with rituximab, the risk is extremely low, with recent incidence estimates in the range of 5/100,000 patients exposed to the drug. In comparison, the incidence of PML in natalizumab-exposed patients is approximately 1/1000.”

I also think if you switch from tysabri to rituximab/ocrelizumab, I think there is a lingering effect that doesnt lower your risk back down.

So again personally if I had a choice I wold go with ocrelizumab even though its new if possible, but thats just my opinion based on any data I can cobble together.


daniel2025
11 months ago

Always treat aggressively no matter your age. Your only a Young lass you want to be as normal as you can for as long as you can. Yes you may get symptoms but you in the long run could be worse if you don’t do anything. Has your neurologist or ms nurse sent a jv test off yet. If your jv positive Tysabri is not an option for you. If your jv negative my opinion go for the Tysabri. I have heard nothing but good things. If your jv positive ask for lemtrada. If you go for a trial you don’t know if you will get the placebo its the chance you take. If I was you I would go for established drug that has evidence of working but of course the choice is up to you. Think of it another way if your ms gets bad and you get worse what if you want children in the future there is too many ways things could go ms is really unpredictable. What if things get two much of a struggle. If you have a son wouldn’t you like to goto the park and be able to or as best you can play football with him think of your future don’t let your ms ruin your life be aggressive.


sandwich
11 months ago

Hello
Unless you get on the trial you would not be considered for HSCT on the NHS as you need to have failed either Lemtrada or Tysabri.

I think a healthy diet has to help but personally I opted for aggressive treatment. Protecting my brain from damage has always been my priority. Without a functioning brain anything else pales in comparison (for me).

This is a very good at a glance lemtrada v tysabri chart from the Barts MS Blog


sandwich
11 months ago

From this site https://shift.ms/msreporters-video/i-need-preserve-brain-health-soon-diagnosis

I like this doc; she keeps it real.


aldon
11 months ago

@sandwich I saw that but I still couldn’t work out what was the best option. I am JC positive so think I might be paranoid about getting PML. I wonder what others think?
Its not as scary until its your reality – you can talk about what you might do and not do and then when you actually have to decide its completely different. Thats how I feel anyway

@vickivictoria I drink green tea and the very occasional glass of wine too. I don’t eat processed foods, refined sugars and switched to nut/soya milks before I was diagnosed. Although I do eat probiotic yogurt. The more I think about it the more I realise I am quite strict with my diet. Its become something I feel in control of when elsewhere I feel so out of control. I guess you can’t help thinking could I be doing more when you should realise that sometimes things are out of your hands. Thats why I am turning to stronger drugs even though I don’t want to be filling my body with chemicals. Sometimes we need assistance

@daniel2025 I agree that it is unpredictable and we should act now so to get the most out of life while we can. I am JC positive but doctor says its still ok to be on Tysabri. I have my own reservations about it and thats why I am looking at my options. I feel like a fish out of water. No clue what to do. Maybe Lemtrada is the way to go. I really don’t want another relapse like the last one and I want to postpone disability as long as I can to do the things I want to . One thing that I am grateful for from MS is a real kick up the bum to get on and do things you want as you have that looming black cloud over you, always threatening to prevent you in the near future.


daniel2025
11 months ago

I wouldn’t take the risk in your position I would be asking for lemtrada and be putting official complaints in if your refused. Lemtrada is really expensive which could be one reason another is not all NHS hospitals do it but I think its more to do with price because people from London before have posted about getting lemtrada. The Tysabri has a cheaper outly for the NHS but to be fair going in monthly for god knows how long the price will amount up eventually. I was told the cists of the drugs by my neurologist its 72 grand for 2 courses of lemtrada that is paid immediately when you get the first course. Its 14 grand for the Tysabri each course. Tysabri in the long run is more expensive as you have to keep having it every month. I suspect your neurologist is watching the bottom line because if Tysabri fails they will know quickly in most cases in a month or two if your ms is aggressive and they will have paid less money out if its stopped. I would not take any changes with your health lemtrada is a good drug yes there is side effects that you get during the infusion but they are not completely unbearable. Yes you have to have monthly checks but this is good because issues can be picked up quickly. The checks go on for 5 years. Yes there is a risk of thyroid issues but they are easily managed with a tablets. On the other hand I was in your place I’m also jv positive and I felt the risk was to great for Tysabri. I had lemtrada but my ms nurse and neurologist said while there happy to chance Tysabri if I sign a liability waver they said they think the risk is too great. In my opinion lemtrada is the way to go. If your neurologist refuses put a complaint in and if its still refused ask to be referred to a different hospital. If you think lemtrada is the way to go its your health at the end of the day go in and demand the drug. Cost should never come into it if its the right drug you should be offered it.


Anonymous
11 months ago

Thank you for your articulate and calm response @aldon. We sound very similar. You sound bang on with your diet. So another question? Are you stressed? The probiotics are great btw?

I think we’re all after the same outcome and we all choose different methods and choose to take evidence from various different sources. Which is great and exactly what makes us human. I look after my brain too in a holistic way. There is so much evidence now that our gut is linked to our brain – a second brain if you like. This article articulates it far better than I could:

Meet Your Second Brain: The Gut

Another tip I use if I’m not feeling great is drinking turmeric tea or turmeric with milk and raw honey. They’re both anti inflammatory. I have not been juicing lately, but again today had a gorgeous green juice and I’ve picked up a bit πŸ‘πŸ»X


cat-handleigh
11 months ago

I am 26 and used to inject 3 times a week with Rebif but this wasn’t effective anymore and I was still relapsing. I want children in the future so this drove my decision to switch to Lemtrada in November of last year that and the fact a neurologist advised this was one of the best treatments for me. I’m now 5 months into the treatment and so far everything is going well and I have a lot more energy. I agree about diet and also think yoga and regular exercise are a godsend.

I say go for whatever your gut says but I certainly don’t regret my decision and will continue to recommend Lemtrada to fellow MSers from now.


tracyd
11 months ago

@aldon
Like our MS our treatment paths are all different, what may suit one person may nor suit the next person through factors like likestyle and health or just personal choice.
For me Lemtrada was the right choice because of it’s effectiveness of stopping MS in it’s tracks, I had experienced 6 big relapses in 6 months making my RRMS in the very highly agressive catagory. That it was also helping preserve brain mass by stopping new lesions appearing was also a high factor in that choice. Another motivator for me was that having Lemtrada early offered hope that I could possily have some of my symptoms reverse – which none of the others really offered.
My story is one that I have published in real time through the last 2 years, so it’s all there, as it happened including detailed accounts of the in hospital treatment process.
My blog details from 33 days before my Lemtrada start date and through the whole journey so far. Please take a read at:

http://www.tracyslemtradajourney.co.uk

Year 1 of the blog is also available on Amazon as an easy to read eBook for Β£1.99 with all proceeds coming directly here to the nice people at SHIFTMS as it’s a registered charity.

https://www.amazon.co.uk/dp/B01GE1V00M

You have a friend request, if you need to talk I’m happy to share contact details by PM xxx


aldon
11 months ago

@vickivictoria I also drink turmeric tea – I havent had a cold or other illness in the time i’ve been drinking it either. I recommend it to everyone! haha I make it with lemon too but recently read that citris could be bad for people with MS. I hadn’t noticed it with me but am trying to cut down (although I do love freshly squeezed orange in the morning) as my eyes start to go a bit funny again…
I’m not stressed although when I had my latest relapse I was looking for a new place to live and a job… 2 of the most stressful things to do. So am taking it easy again
Would you recommend probiotic supplements?
Hope things are ok with you

@cat-handleigh I’m glad you found something that works for you. Unfortunately for me I don’t have a gut feeling. My neuro sold Tysabri to me and fed me horror stories of the other treatments haha I’d love to go med free but I am worried my legs are becoming weaker and will get worse if I don’t try something stronger. How is your Lemtrada treatment going?

@tracyd Sorry to hear you suffered those gruelling 6 months or relapses. I’ve read through some of your experiences on the link – I have to admit I had shyed away from doing that in the past as I was scared of hearing things which might frighten me. Actually, it was comforting. I would recommend to others to have a read through too. I’m also trying to write an account of whats going on with me at the moment (in case my memory completely goes) and its so difficult articulating the experience – especially with this persistent brain fog


Anonymous
11 months ago

@aldon yes to probiotics. And thank you I’m feeling good right now. Back on the juicesπŸ₯•

I can’t recomend a probiotic brand as I’m still trying to find one. I try different brands and I found out recently that only a few get through the three barriers to the gut – the stomach, the gut and into the intestines (something like that anyway!) If I wasn’t dairy free I’d actually make my own kefir, it doesn’t sound that difficult., the dairy free option uses lots of sugar and to my mind that just doesn’t make sense – feeding the gut with sugar! I do eat saakraut most days and this seems to be helping my gut. I post healthy/holistic alternatives on a closed fb page: https://www.facebook.com/groups/Controlms/ you’re welcome to join (if you haven’t already). Keep smiling πŸ™‚


quillie
10 months ago

My daughter is 23 and was diagnosed in December 2016 she was offered lemtrada straight away, but was very nervous of side effect’s etc and has a 6 month old daughter, she decided to go for it after reading lots of info, she has just finished r1 at stoke, where they are amazing, well looked after, she has had a pretty good week, couple of headaches and a slight rash, but extremely tired, resting at home now, so only time will tell, but nuero seamed to think it was best to hit it hard and fast. Very thankful for the NHS !!


wenredy
10 months ago

I’m 28 years old, 5 years on Tysabri and haven’t looked back. I was VERY hesitant to change from Rebif interferons to Tysabri, and it probably took about a year for the neurologists to convince me to change (new lesions appearing on MRI’s, I have only brain stem, spine lesions and optic neuritis) . I was very risk adverse and they didn’t have the JCV test back then, but as others have said you run the risk of relapse and disease progression. So I changed to Tysabri and have been relapse free for pretty much that whole time, no new lesions and some have reduced appearance on scans. Now I’m more pro-aggressive therapy, easier to prevent the damage before it occurs. Looking to make the jump to Lemtrada, by my neuro keeps talking me out of it; a conversation that’s been going on for about two years now lol.


abbie1995
10 months ago

I am 21 years old and was diagnosed with MS at age 20 last year, July 2016.

I have been taking Tecfidera (Dimethyl Fumarate) twice daily since December 2016, unfortunately this hasn’t worked out quite as I’d hoped. I have had 2 quite big relapses since starting this treatment and will be talking to my neurologist and nurse tomorrow about taking stronger DMTs like Tysabri or Lemtrada.

I’m averaging one relapse every 2/3 months and for me, my MS is impacting my life far too much/often to not consider the stronger meds. I’ve never had the JCV test so hopefully that is negative and I can push ahead and find the right treatment.

I hope to start these stronger DMTs as soon as I can and for anyone who is interested in the difference between Tecfidera and the stronger meds, I will post a comparison for you as soon as I can πŸ™‚

Abbie

Post Comment

You must be logged in to reply to this topic.