Last reply 1 week ago
Ocrelizumab (Occrevus) or Alemtuzumab?

Has anyone has had a dilemma to choose between these two DMT’s ? I have had relapse remitting Ms since 2006 (with optic neuritis diagnosis) and generally have been good but I had a major relapse in February affecting my vision (bluriness) and now my neurologist has offered the idea of taking these third line treatments Ocrelizumab (Occrevus) or Alemtuzumab. I’ve never been on any DMT’s,… I have read lots about them in ms trust and ms society online and am aware of the high risk side effects of them, hence debating Which one to take or not take at all but the high slowing down progression is very appealing!!! At what cost, who knows!! Need more information on how those being on Ocrelizumab (Occrevus) or Alemtuzumab are coping with it and which side effects they have got and after how many years! Preparing myself for the worst,… since Thyroid problem affects many with Alemtuzumab, is dealing with under active thyroid very hard? How are people coping with it?

Thank you for those of you who have taken the time to read my loooong message! Any input greatly appreciated ;0)

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mlgilber1
3 weeks ago

Hey! I’m on Ocrevus and love it so far! I chose it because they said my MS was aggressive and it was an aggressive treatment with less side effects. I’ve only had my first two half doses so far, but within a month a lot of my symptoms have lessened tremendously or disappeared. I haven’t had to use my walker since a week after my infusions and my walking is great now. I’m also really fast now. Infusion reactions are really common, but they’re great at taking care of it. They give premeds to help prevent any and if there’s a reaction they stop the infusion and give more meds till it goes away. I had a minor reaction during the first infusion, an itchy scalp, but no reactions during the second half. I don’t know much about lemtrada so hopefully someone on it will post. Let me know if you have any questions. Best of luck!


stumbler
3 weeks ago

Hi @milli and welcome.

DMTs are powerful drugs, which do come with some potential side-effects. But, this does need to be weighed up against the side-effects of MS and how that can impact your quality of life.

The proactive strategy of hitting MS hard and fast with the strongest DMTs is now becoming the norm. Starting on the lesser effective DMTs risks accumulating MS damage as you step up through the effectiveness of the available treatments.

Ocrevus (Ocrelizumab) is the latest DMT to be approved, so there is less “real” information than there is for Lemtrada (Alemtuzumab). You can locate the previous conversations on these DMTs by selecting the relevant tags that have been automatically added to your original post above.

PS I removed your update on the “Feeling weird on lemtrada” post, to avoid duplication.


milli
3 weeks ago

Hello @mlgilber1, thank you so much for your information. That’s really helpful and reassuring. I wish you ongoing healing and a great journey through this path. Many thanks again 🤗


dominics
3 weeks ago

@milli – I have had RRMS for 25y and had Rebif, Copaxone and now Tecfidera.

In early January I start Ocreluzimab! I am patient 1 at my centre so they are being v cautious. I am relatively fit and healthy and have tolerated the other meds reasonably well.

I think there are several reasons why they are starting me on it.

The first is that it is the result of a 1y campaign on my part to get it. I know the MS Trials team particularly well (same nurse for last 15y) and expressed concern over two things.

– that all the DMTs seem to have much lower efficacy after early 50’s. I am 49 now and I feel the clock is ticking.
– the clinical opinion amongst the leaders in the field is advocating treating MS as aggressively as possible as soon as possible. I am just at the time when I may tip into PPMS, and Ocreluzimab is not licenced for that so I need to get it now to avoid missing out.

The second is tied to the first. I have been referred to the NHS neurologist by the trial neurologis,t as the latter knows full well my intent, and as the open-label active ingredient Dimethyl Fumurate (Tecfidera) trial that I have been on for 7 years is ending this month, making it the ideal time.

The NHS neurologist here is moderately cautious so 1y ago I went to see a London based NHS neurologist (my GP referreed me on my request – you can just ask) who I knew had worked on the Ocreluzimab trials and was an advocate. I asked him about Alemtuzumab and he steered me (as expected!) onto Ocreluzimab and wrote a letter, at my request, to my GP and neuro team explicitly stating that he felt that I ought to be put on Ocreluzimab as soon as it became available. That was invaluable as said neurologist 8is well respected in the fieod, not seen as a whack-job!

My personal view is that I will go at this damn disease in an evidence based way (no woo woo anti-science for me!) and as hard as possible. Diet and exercise and keeping the brain active are things I can do. I write a lot ( http://www.theproblemwithdata.com and http://www.dominicshadbolt.com ) and read too. I have just finished two degrees as I never did when I was younger. I am looking for work at present and expect to start with a Government dept dealing with the aftermath of this daft brexit in early Jan.

I fully expect to get upper respiratory tract infection after at least the first infusion, but that is easily treatable. I’ll take that any day over the thought that minute by minute the MS is making me slowly deteriorate inside, unseen.

To prep me I will have had 9 blood tests, 2 jabs (Hib and pneumococcal) and a chest x-ray. On the day I will get a steriod drip first (likely methylpednisolone), then an anti-histamine (TBD) and then the drug. 300kg the first time and then two weeks later 300mg again . After that and assuming I tolerate it then it is 600mg infusion every 6 months.

Feel free to ask anything and if I can help I shall. If you have been offered it then I assume it is right and safe, so I’d jump at it. That is my personal opinion.


dominics
3 weeks ago

300mg the first time. NOT 300kg, apols. Fat fingers!


milli
2 weeks ago

Wowwwww @dominics many thanks for all your information, it’s anazung and really helpful since I’ve been offered both Alemtuzumab and Occrevus and I just float between the two, one second thinking I’ll go for Al then get so scared of the risks, then think going on Oc then freak out not knowing enough about it but your information is soooooO helpful and I am ever so grateful for it. 🙏🏼 I need to reread your info and I’m sure I’ll be touching base with further questions on that . Thank you again 🙏🏼🙏🏼🙏🏼


milli
2 weeks ago

@stumbler again a HUGE thank you for your support and information. Really massive thank yuu,… it all really helps 🙏🏼🙏🏼🙏🏼


dominics
2 weeks ago

@milli – I suggest you ask the Neuro which one they think is most appropriate.

I think it is a bit unfair to put the burden of choice on you. Why should you be expected to know all the ins and outs. I know a tiny bit and am v concerned that no-one use my opinions and experience, or that of anyone else, to make a decision for themselves. We are all so different and in different circumstances that what is great for one is not for another

The choice to decline is always yours.

Again: put the burden of choice on the medics. They ought to have a view with regards to you.


marlon_dagg
2 weeks ago

I’ve just been diagnosed and have to offered both these treatments. I’m pleased (not in a twisted way though) that the choice is pickling everyone else’s brains too!


hels
2 weeks ago

Hey @milli

I’m starting Ocrelizumab in the New Year. Had my bloods taken and chest x-ray today! Chatting to my MS nurse and she said it’s been used in America for a while. Maybe you could try finding some American feedback on it? X


dominics
2 weeks ago

@hels

Have you had to have any additional vaccinations? I am having to have Hib, Penumococcal, 9 different blood tests as well as a chest x-ray.

Apparently the clinical neuro pharmacist has decided to write an enhanced protocol.

Which hospital are you at? Thanks.


hels
2 weeks ago

@dominics

I had 9 bloods taken today but need to get a 10th taken for JCV.

I may have to have TB jab but that’s TBC at the moment.

No mention of Hib or Penumococcal. I’ll ask about those when I go back for the JCV.

I’m at Heath Hospital, Cardiff.

Going back a few posts…I had the choice of 2 and the final decision was mine also.


dominics
2 weeks ago

Thanks, @hels

I am not trying to frighten you by mentioning jabs. I appreciate they are trying not to rub me out, but the desire of individuals to express and validate their medical views by rewriting protocols is not a new thing.

Lots of US experience, but as Brits we always seem to know better.

Chin up eh?


milli
2 weeks ago

Thank you @dominics and @hels and everyone else that has written in this blog and will write in the future :0)

As we all know this is such a Huge decision making process, one day I am certain I go for Occrevus (safer) and now after many soul searching and reading and talking to family and friends, again somehow I am being drawn to go for Alemtuzumab, preparing myself psychologically for dealing with Thyroad and IPT(blood related) problems and hoping the killing of the B and T cells and resetting the immune system, will be worth it in the long term,… It’s a very tough call as you all know. At the moment apart from the problems that were related to my relapse in February, effecting vision (that thankfully are getting better) I am blessed with having an active normal life, enjoying sport and running after an energetic young daughter, I know once I have the Alemtuzumab, things will change but somehow the positivie in me, says I can get through it and in long term it will hopefully give me a better protection to be there and be fit for my young daughter and active in her life.

I feel I can’t get a direct answer from my medical team and the decision making as we know is on our own hand,… No medical team, can or wants to give me an answer apart from the info/guidelines on mstrust and ms society, but when I asked my neurologist, which DMT he would have chosen, if god forbidden it was him with my MRI scan results, he said I would got for Alemtuzumab and reset everything and keep up with my ongoing holistic approach along the way,… first it was shocking since I never thought even to go on beta-interferon, let alone the third line treatments! it was an absolute shock, but also a reality check! I trust and respect my neurologist’s opinion,… again he said I should choose myself and I understand that.

I really respect you all for making this tough decision, congratulations and well done for that. Once it is decided I am sure the mind will be rather peaceful and calm and one will swim with the flow rather than against it back and forth! ;0)

I am a positive person,… let’s see what destiny and our path in univese is, The journey is more fun than the final destination! let’s see where the dice falls ! …
All the best wishes to all of you and again thank you :0)


dominics
2 weeks ago

Go for it. If the medic says that then they are likely to know!

Good luck.


milli
2 weeks ago

Thank you @dominics,…. good luck to all of us. 🙏🏼🙂

I’m starting to become calm and accepting of dealing with side effects of Lemtrada,… let’s see what happens! And again thank you all for your input on this blog.


dominics
2 weeks ago

@milli – I start Ocrelizumab in early Jan. I am quite sang froid about it. Having done many dangerous and stupid things in my life I was either very lucky or been bolted back together. I really am quite fatalistic.

That aside, I do not want to feel ill or kark it unnecessarily, because I am a big coward at heart.

So far: 9 blood tests, a chest x-ray, two further vaccinations on top of the usual flu jab. Hib and Pneumococcal (Prevenar 13, they prefer Pneumovax II but it is unavailable in the UK atm).

The infusion is in a special room in the neuro ward. I start on IV steroids and then get an IV antihistamine, THEM, after an hour I get the main drug.

I still know that I have been at higher risk in the previous 2 weeks so am reasonably chilled. This is a result of a 1-1.5y effort to get this drug, so mostly, as it drips in, I’ll feel a great sense of relief.

All I’d say is that if you get Lemtrada then you can count yourself as v fortunate to receive a cutting edge treatment for MS.


marlon_dagg
2 weeks ago

I’ve read your last two posts over and over @milli and they’ve just given me a proper kick up the back end!
Onwards and upwards!


milli
1 week ago

@dominics wishing you all the best with your treatment and a positive great journey 🙏🏼😃


dominics
1 week ago

@milli – very kind, thank you. Likewise.

You are inspiring people too – nice one.

Since I wrote that screed above they have ordered yet another two blood tests and then 2 days before a full blood count (FBC) and for some inexplicable reason an ECG. My Neuro is super-duper risk averse I guess. Better that than reckless I suppose.

My nurse said to expect to spend a full day on the ward the first time. Apparently it is shorter after the first go.


milli
1 week ago

Good morning all,

That’s it, date has been set for early January 2019 to start my DMT treatment with Lemtrada (alemtuzumab).

Feel free to give me advice on what to expect on the very first day of infusion treatment, do’s and don’t s! I hear that drinking water 3/4 days before and throughout the infusion week is very helpful.

Do we then hide away for three weeks, in masks or away from social life and everyday life , protecting ourselves from germs and viruses whilst having a suppressed immune system. I have a young daughter, needing school drop off and pick up everyday, so that’s going to be interesting ;0) MS Nurse suggested three weeks of rest and being off work and being mindful of crowded public spaces!!!! Well, That will finish me off!!!! I’m a socialable person and love the company of friends,… so god help me ;0) 😱🤣😂

Also will that 6 hour a day hospital time draaaaaaaag forever?apart from listening to music and audio book, etc, can we bring different friends to chitchat away the boredom!

Do we have to sit still?! Can we walk around/ move around?! Most importantly Can we have coffee and chocolate treat in between☕️🍰 ?! ;0) 😱😅😂🤣🙏🏼


stumbler
1 week ago

@milli , you may want to have a view of out @tracyd ‘s blog of her “warts’n’all” Lemtrada experience :-

http://tracyslemtradajourney.blogspot.com/

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