Last reply 3 months ago
Tysabri, Lemtrada or Ocrevus?

Hello folks 👋🏻
I’m Sarah, I was diagnosed last year (first CIS was on world MS day, would you believe.. 🤦🏻‍♀️)
And I’ve had 4 episodes since then – May episode (which saw me admitted to hospital, steroids, LP and scans); further episode in August (same, plus left me walking with a stick); minor flare at end of Oct; and big ol’ relapse a few weeks ago in January where new symptoms appeared and we suspect new lesions but MRI is needed to confirm.
When I was first scanned back in May, MRI showed lesions on my brain, cervical spine and a a couple dotted further down, so they assume there have been episodes before this that I just didn’t realise.
Skip ahead to this week and I had my first appt with MS nurse and new consultant neuro at Addenbrookes, where we talked treatment.
They have given me a couple of weeks to decide between (in their order of preference): Tysabri, Lemtrada and Ocrevus.
I’ve done some reading myself, but I’m keen to get a view from people who’ve experienced some or any of these 3 treatments.
Initially I was leaning towards Tysabri (was JCV tested this week at the clinic, results pending) – aware of PML risk overall and requirements of regular infusions and monitoring but now I’m not so sure. My OH is very worried about the risk and I can understand that, we’ve not had the best luck health wise even before this and I’m now not sure.
The reason I initially swayed to Tysabri vs. lemtrada is the neuro pointed out that once lemtrada is done, it permanently alters your system and while you can move from Tysabri to Lemtrada, you can’t move the other way – that door is closed.
So I’m really looking for some help and advice to help us round out our thinking and hopefully help us get to a decision.
Thanks in advance for any help!

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stumbler
3 months ago

Hi Sarah ( @almosthappy ) and welcome.

I’m afraid that these three treatments arrived on the scene too late for me. But nevertheless, I understand the considerations when choosing a specific treatment. Now, there will be views expressed both in favour and against these treatments, as we are all different and what works for one doesn’t work for another.

You can locate the previous conversations on these treatments by selecting the appropriate tags that have automatically added to the foot of your post above.

You have to be comfortable with your choice of treatment. And, it needs to fit, as comfortably as it can, into your lifestyle. On this basis, you have :-

Tysabri : A monthly infusion and an ongoing commitment into the future. There is an underlying risk of PML, although this is mitigated by monitoring. A consideration is the risk of rebound activity in the washout period, if this treatment has to be stopped.

Lemtrada : Five infusions on consecutive days in year one and three infusions on consecutive days in year two. Monthly blood and urine tests will be required for the following four? years. Thyroid problems are a real risk, but are manageable.

Ocrevus : The latest treatment involving six monthly infusions. Only recently been approved for use in the UK. I think it’s fair to say that this treatment has high hopes.

You might want to have a look at recent posts from @dominics , who has recently had to make a similar decision.


mlgilber1
3 months ago

I was diagnosed this summer when I was admitted into the hospital and put on Tecfidera. Then a month later had a bad relapse that made it hard to walk since I couldn’t move or feel my left leg and was admitted again. They gave me steroids again, but it didn’t help so they did plasmapheresis which was awesome. I still had to use a walker most of the time because of balance issues or because I was so dizzy. They told me my MS was aggressive and I needed a different treatment. I wanted Lemtrada, but wasn’t given that option. It was between gilenya, tysabri, or Ocrevus. My neuro was leaning towards Gilenya or tysabri, but the heart issues freaked me out because I already get chest pains and palpitations and the pml risk scared me even though I’m not JCV positive. I decided on Ocrevus because he told me I could go back to one of the other two if it didn’t work even though it was the more aggressive option. I had my half dose infusions this September and had a slight reaction only during the first dose. I got a little itchy, but that was common. Second half dose I was fine. I felt slightly worse for 2 months and had to always use my walker, but then I felt great. I know it wasn’t intended to help with symptoms, but it has tremendously. My walking is great. No need for my walker, balance has been awesome, and I’m faster. I no longer get brain fog, spatiscity, or the MS hug and all of my other symptoms have lessened tremendously. I chose what I felt was right for me. I have my first MRIs this month to see if it’s helping with progression and will get the results beginning of March when I see my neuro so I will update on here then. Best of luck!


dominics
3 months ago

Hi there @almosthappy (Sarah),

It sucks I’m afraid. There are many things you can do to mitigate the effects on your life. I’ve had it 26+ years now and have proactively engaged wityh proven strategies. Bothe for treatment and lifestyle. It seems to have helped. Before I come off too smug, I have been an avid hobby smoker of roll-ups, at times. Not good but oh so nice 😉 Mrs S has put paid to that!

I believe you are on the right track; there are several greater issues at play to be aware of.

1 – Unless one is a neurologist that specialises in MS, the thoughts and scientific (not anecdotal) research surrounding treatment strategies as well as a deep awareness of the use of DMT’s and the recent and current trials then the idea of choosing a therapy based on the anecdotal experience of others is baffling to me. A single experience by a single person does not begin to tell the whole story. We all have multiple concomitant factors that may influence things yet we all seem happy to overlook differences and focus on ‘the event’. Like most, I skip to the bad reviews on Trip Advisor or Amazon. It is human nature.

2 – Most neuros I know and have discussed like to think it is empowering to give a serious choice entirely to a patient. I don’t know other medics, say your GP, who give you a choice of options of antibiotics. They have spent a long tme at school, even more specialising in a field and, in the case of MS and I know for certain at Addenbrookes, there is at least one specialist neuropharmacology expert (a pharmacist) as part of the team that decides. It is slightly my hobby-horse as I think that at the very least you ought toi be given options whilst also being told what, in their opinion, is the most suitable therapy for you.

3 – Suitability of therapy is a balancing act of your disease, its level, your lifestyle, your medical history, allergies, religious convictions (if any), your future plans (children, moving abroad etc) and so on. The message iis that all this is uniquely you, a complex mix of factors and has a huge bearing on the choice of DMT. On that basis, I believe that the treatment team needs to have their feet held to to the fire with regards to making a recommendation, even if you choose to ignore them. Personally, I insist that my notes reflect the case that I have asked them for a steer and to give me the pros and cons. I am not a Neurologist, how the hell am I to choose unaided, except by Dr Google and the personal opinions of others.

4 – Dr Google – Google is an amazing repository of information. Data sheets are a good example. Definitions of PML from trials etc. What you don’t get from just reading the abstract of a clinical paper or data sheet is a reliable indication of the incidence of side effects. With a drug in trial everything that happens to patients must be recorded. get hit by a buss, that can appear as a potential side effect. “Attraction to large moving public transport vehicles! If there are two deaths in the trial – because of entirely different reasons than the drug but remember, deaths on trial are all recorded, then it definitely makes the data sheet. Scary stuff if you live in a town with a lot of buses and trams. Many people seem content to read things like this and decide a drug is too risky as they have a large amount of buses where they live and only a fool would take that risk.

5 – I may be being a bit facile but the point is correct. It is why it is so important to speak to experts and not amateurs.

I chose Ocrelizumab for this reason and so far I am wondering if they gave me saline 😉 I had zero effects during infusion and so far zero effects. Apparently it is a very well tolerated therapy. You only need to look at the Roche financials to see that the uptake of this drug qualifies it for blockbuster status. The reasons for that are usually because the medics like giving it, the patients like taking it and the demand grows that way.

Good luck in your choice; do not be put off by people who don’t understand the scientific method fully!

Best,

Dominic


almosthappy
3 months ago

Thank you all for your replies – it’s really very much appreciated.

@stumbler thank you for your helpful summary and for pointing me in the direction of the other posts – I can see I have some more reading to do!

fingers crossed @mlgilber1 that you find no evidence of disease activity with your MRI results – and thank you for sharing your experience of Ocrevus. I have to say much of my time with the neuro and the MS nurse was spent discussing Tysabri and Lemtrada rather than Ocrevus so I feel like I’ve probably not given this option as much thought as the other two.

@dominics thank you for your detailed answer, and I totally agree with you on all your points. I think part of me asking here for views and experience is more for me to round out my knowledge – but it’s sage advice to skip the extremes on either sides (evangelists and crusaders for good and bad are often easy to spot!) and just take the balance of views into consideration.

I think the long and the short is that my OH and I need to chat this through. I really apreciate all your help!


dominics
3 months ago

@almosthappy – and apologies for the rambling and non-proofread reply. All my fault as I was trying to do several things at once. But…I do have a clean(er) and tidier office.

And yay, I cleaned the oven. A real pain-in-the-arse job but so much better when its done.

It seems the Ocrelizumab hasn’t made me any less OCD regards cleaning!

Having the support of someone else is so nice. I can’t begin to acknowledge everyone who has supported me. (Spoiler alert: it is possible to get a bit snappy at times with MS; having someone who understands that is critical.)

Best,

Dominic


milliepipkins
3 months ago

Hi! I had my first round of lemtrada in April last year. My relapse left me unable to walk, and after my first set of steroids, I relapsed again so headed straight for lem. The most aggressive obviously has its pros and cons. Touch wood, and it hasn’t been even a year yet but no relapses, completely mobile and no visible signs of MS. My tingling in hands and feet has not disappeared sadly though. Anyway, the infusion process is tiresome and the recovery period is a real pain, very tired, lots of meds, follow a “pregnancy” diet and be so careful of germs! I have had multiple urine infections and subsequent thrush due to my low immune system and one chest infection, but nothing else thus far. Monthly blood and urine tests, you must keep on top of to ensure you’re a fit bill of health! I know it’s such an extreme drug but it has completely halted my MS and I feel that outweighs any cons I suffer. But make sure you research all, as your neuros wouldn’t suggest them if they wouldn’t benefit. See which fits best with your lifestyle. I stayed indoors for 3-4 weeks after to avoid any germs then slowly went back into the real world, just as I say, be mindful. Antibac gel!!! Good luck my love xx


mamawals
3 months ago

They all have positives and negatives and none comes with a guarantee. I personally chose Tysabri because it’s quite effective, doesn’t tend to have a lot of side effects, it isn’t permanent like Lemtrada, and my neurologist said in his experience about 5% of people don’t respond well to Ocrevus. I had a tough first infusion with Tysabri but I think that’s because I got a bad cold at the same time. The last two infusions were fine. If my next MRI (next month) is good then the plan is to do extended dosing because it appears to reduce PML risk. I’m paranoid about PML and am JCV positive so my neuro has agreed to test for JCV as often as I like. My last JCV level actually went down. It was low to begin with but it’s reassuring to see it’s not increasing. Good luck with your decision. I hope you have good results with whatever you decide.


dominics
3 months ago

@mamawals

It could also be put that your neurologist has found that 95% of people do respond well to Ocrelizumab 😉

I am really keen that we – the patients – are better able to effectively use all the data that is bandied around. Some key points about data to consider when you read/hear/see anything are :

Without context, data is just meaningless numbers.
For data to be useful information it needs to be part of a Data Story.
To take the example above we need to know how long the neurologist has been in practice, how many patients they have personally prescribed ocrelizumab to, upon what are they basing the 5% remark on (did they see it first-hand, hear it etc?), and what do they mean by “don’t respond well”. Are they referring to 1 month, 6 month, 1 year follow ups regarding disease progression or do they mean infusion reactions. If the latter then it is important to know what infusion protocol was followed and has it changed at all?

Medics are just as guilty at times of making remarks that they may be happy explaining if asked but do not take into account the fact that as patients the vast majority of us are lay-people with no specialist training so we naturally gravitate towards apparent bad things.

I am no medic but I do specialise in data use and interpretation, which is why I get so worked up by the effects of innocent and well-intentioned remarks.

I’ll get off my soap-box now 🙂


hels
3 months ago

@almosthappy @dominics

I’ve done a lot of digging a reading on Ocrelizumab and have spoken with @dominics on a previous post of mine. I feel I have to point out that the bus analogy was formed to help put into context something I’d read. It’s important to acknowledge that this drug is rather new in the UK so hence my concerns about not having much information from fellow MSers who’ve taken it. I would be stupid to take this drug simply based on the one leaflet I was given so I went aGoogling! I’ve also spoken to my previous MS nurse who’s neurology department formed part of the UK trials.

From what I have read it seems to have great results for those who have been hit hard. I feel if I were further down the road then the pro’s would out weigh the con’s for sure. At this point in time, a young single woman with a flourishing career and only 3 relapses under my belt I’ve decided to postpone. And postpone based on a cross section of reading medical papers and opinions from fellow MSers. I have great expectations for this treatment but at this point in time and considering family history of phneumonia, bronchitis and breast cancer I’ll be holding back for now.

I feel more empowered for my research and would urge anybody considering to take agressuve drugs, no matter for what condition to do the same. I wasn’t confident in my decision to take ‘O’ but am now confident in my decision to not take it. There are emotional and phsycological effects that come along with our decisions which strangers cannot see. I think it’s important to consider this when projecting opinions on platforms like these. Equating Ocrelizumab to saline doesn’t sit well with me. I understand the context it was meant but at the end of the day this is new territory for the layman MSer in the UK. Things can be taken out of context all too easily as we know.

I mean no ill feeling by this post. I just felt I had to voice my reaction x


juliacemilligan
3 months ago

Hi there,
I was diagnosed in June 2017 with very active RRMS and because of this was offered lemtrada. My neurologist was of the thinking that we should hit it hard and fast. He said I could try the lower DMTs if I wanted to but he believed lemtrada was the best option. There was also the fact that I was 26 with no children so after the lemtrada is done I could try for a family if I wanted.
I was happy to go for it as I felt the benefits outweighed the risks and I also felt lucky to have been offered the best treatment as my first treatment.
I wrote about my round one experience on here if you want to go to my profile and read it (I’ll need to put my round 2 one up, I had round 2 in October last year)
Even after round one I felt a positive difference, my walking was much better and I just felt like I could do more.
My MRI before round 2 showed no new activity which was promising.
It’s a long haul with the 4 years of 4 weekly blood tests but I would recommend it.
Feel free to message me if you have any questions xx😊


dominics
3 months ago

@hels @almosthappy

No offence taken! I apologise if the saline remark sounded flippant. It isn’t meant to be. My nurse and I were joking around as two fellows on the wrong side of 45. I have had no infusion reactions whatsoever and we were joking that it may as well have been saline, thus saving the NHS a fortune. I wasn’t being facile.

The woman started about 2h after I did started coughing when boing infused. They merely stopped it for 10 min and then dialled back the flow rate and all was well for her. As she is Albanian by birth we could really chat well as her English is fairly basic against zero for my Albanian!

Something I struggle with is the fact that I have had MS 26y. I try not to live in it and that is far easier for me to say as I have had it for more than half my life now so its presence is totally normalised for me. When I have something happen to me – symptom, life event etc – I look for ways that it isn’t MS. Not always the best. The Nurse who I know nest (25+ y) had to give me a proper talking to about dialling back the intensity of my activities when I was mid-MSc as my body was not enjoying being worked too hard.

What frustrates me to a certain extent is that there was no effective treatments when I was diagnosed. The interferons and the glatiramer acetate drugs came along and were game changers in so far as there was some sort of pharmacological intervention at last.

Compared to the current crop of drugs they really are a poor second. The antibody resistance that usually builds up in a person over time using them renders them (interferons) largely ineffective over time. This isn’t my opinion, there are scores of reputable papers on this. I tried Copaxone (glatiramer acetate) for a while but I simply couln’t get rid of the injection site reactions fast enough and thankfully the CONFIRM trial was recruiting. This is known as Tecfidera now.

Back to my point: when the science supports hitting the disease hard and fast and early then, barring some patient based contra-indication, I fail to see why we wouldn’t follow that guidance. Professor Gavin Giovannini who writes on the Barts MS Blog talks very well about it. He has been interviewed for Shift.MS regarding risk/benefits here: https://goo.gl/w1jxRs

There is no such thing as benign MS. It it there damaging us in different ways, all the time. This is a good video – https://www.youtube.com/watch?v=kaF9RF75rk8 I think that if you are diagnosed now you benefit from the research gains, knowledge, insights and drugs that were never even available when I was diagnosed. Additionally, in my case I have cheated the numbers as I should by rights have transitioned into SPMS or even PPMS

“Although multiple sclerosis (MS) usually begins with a relapsing-remitting course in 85% of patients, over long term follow up the majority of patients develop sustained accumulation of disability referred to as secondary progressive MS (SPMS). About 15% of MS patients develop sustained accumulation of disability from clinical onset without reporting a preceding period of clinical relapses and remissions and are referred to as primary progressive MS (PPMS) https://goo.gl/xmtG6R

The data shows that this happens more often than not. With the NHS refusing to fund Ocrelizumab for PPMS it was key for me to get it onboard and started before I tipped past the threshold.

Getting onto the most advanced therapies, as soon as possible, makes sense to me as delaying the effects of this disease are key. I am guided by the science as this is the only reliable source of information. Keeping the best therapies for 3+ years down the line, despite risks (a possibility), versus allowing the MS to be unnecessarily active (a guarantee).

Giovannini talks very convincingly about de-risking these drugs. and the first video in this post is definitely worth watching more than once!

Best,

Dominic


gillian8182
3 months ago

My advice would be hit it hard and fast. I went with gilenya for my first DMD and it lasted 1 1/2 years. Now on lemtrada. I often regret my decision not to take lemtrada as my first DMD. gilenya left me with multiple brain, spinal lesions and significant brain atrophy.

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