Hello, i am new to this forum and i know these sites can be a source of education and encouragement and i was hoping to gain a little feedback from anyone who is willing to read my post and reply. I won’t bore you with too many details, but basically my neurologist wants me to start lamtrada treatment asap, he thinks my ms…If it is ms at all…Is quite a rapid type of ms. I can understand why he thinks it is ms based solely on my symptoms, which are typical ms symptoms, but i question whether the medical findings support his diagnosis. He said i have had a few episodes of optic neuritis, but my optician could not see any evidence of optic damage, so i question the optic neuritis. He also seems to think i have been having a relapse every month or so, but i am worried he has just put it all down to ms, when in fact it is all just different things happening after the other. My bloods were fine, my scan have shown lesions in my spinal cord at c2, c3 and, c5, and a scan of my brain about a year and a half ago, for a different matter, showed 2 lesions. Is this enough for ms? Also my lumbar puncture came back with a count of 14 white blood cells, 0.26 for protein, and mildly increased CSF IgG index. I’m no expert but these numbers seem very low to be ms, never mind rapid ms needing such aggressive treatment as lamtrada. My o bands are pending and a recent brain scan is also pending. I just wanted some advice or opinions as to whether my results are consistent with ms results and whether i should go ahead with such aggressive treatment. I have 2 very young children and i don’t want to be in hospital for 5 days and go through this treatment if it’s not needed.
hi jembob
my sister in law gave me a newspaper cutting about someone who had alemtuzumab.
about 2008 when i was diagnosed.
it was very impressive and i asked if i could have it.
my neuro was flabbergasted.
wondered how i knew about it and anyway it hadn’t been licensed yet.
alemtuzumab was later called campath and then lemtrada.
i’m happy on tecfidera at the moment but would ask for lemtrada if i felt i needed it.
i understand your thinking with you having 2 young children.
however think you should give it serious consideration.
if it means you will be fit and well into their teens, twenties and beyond???
hope you make the right decision for you and your family.
carole x
On the one hand I feel lucky in a way to even be considered for this treatment as i know not everyone is offered it, but then on the other hand I feel hesitant if it is not actually ms and he is wrong. I’m just waiting to see if my lumbar puncture results indicate ms, i have to wait ages to see my neurologist, so i was hoping anyone could shed some light on my results I posted in the first post. Thank you for replying and i hope your treatment continues to work well for you in helping you with this awful disease. Thank you again for replying.
This was in the Barts Blog today and might be of interest.
“In summary to have the greatest impact on MS you have to hit the disease as early and as effectively as possible; based on the current evidence we should be targeting NEDA-3 and if possible NEDA-4 and beyond. With alemtuzumab you get both; some may not like the risks associated with alemtuzumab, but it should be the patient’s choice. With alemtuzumab the risks are front-loaded and with time become less of a problem despite the benefit of the treatment remaining in the majority of patients.”
http://multiple-sclerosis-research.blogspot.com/2017/04/politicalspeak-catching-british-disease.html
NEDA 3 & NEDA 4 mean:
" BACKGROUND:No evidence of disease activity (NEDA) has been proposed as a new treatment goal in multiple sclerosis (MS). NEDA-3 status is defined as the absence of magnetic resonance imaging (MRI; new/enlarging/enhancing lesions and increased whole brain volume loss in NEDA-4) and clinical disease activity. "
Have a look at the Shift MS site: https://shift.ms/
There are lots of people on their forum who’ve had Lemtrada. You might find it interesting to read other people’s experience.
Sue
Hello
I’m a Round 1 Lemmie (get my second dose in August 2017). I was only diagnosed in June 2016 (after nothing worse than numb toes in February/March).
I decided to go for Lem ASAP as, even though I’ve only had mild symptoms, I want to preserve as much as my neural reserve as possible for old age (and the inevitable deterioration that brings us all). Lem is the most effective treatment available as a first line DMD (at least at the moment) so I decided it was the one for me.
The time in hospital and side effect profile did scare me a little - but the thought of more severe relapses with possibly permanent disability or loss of cognitive function or slow accretive damage resulting in a conversion to SPMS scared me more. The time in hospital and the risk of side effects was the price I was prepared to pay to give myself the best possible chance of holding back further damage. I see the time in hospital and the acceptance of the risks as investments in my future wellbeing.
Occasionally I do think “but what if it isn’t MS?” - then I will have taken on these risks for nothing. There is a small part of me that fears lymes as an alternative (I spend a lot of time walking in the Highlands in Scotland / heathlands in the South East and couldn’t rule out having received a tick bite) - and I whilst I had lots of blood tests at my time of diagnosis, I didn’t have an LP so don’t have that supporting evidence. However, everything I’ve read suggests that Neuros are pretty loathe to give a diagnosis of MS unless they are sure - and when I apply the McDonald MS diagnostic criteria against myself I can see the diagnosis is right.
The criteria requires evidence of MS both by dissemination in space (DIS) (i.e. attacks on different parts of your CNS) and dissemination in time (DIT) (attacks on two or more separate occasions) (and a prescription of Lem requires “active” RRMS - meaning evidence of two or more attacks within a two year window). My neuro felt I met this criteria as
(i) my MRIs showed lesions on multiple parts of my brain and multiple parts of my spine (DIS)
(ii) my first MRI (March) showed “enhanced” lesions with contrast on my spine evidencing an on-going attack (and giving me numb toes) and non-active “old” lesions. Evidence of DIT. A second MRI (June) showed one new brain lesion (there had been no new symptoms). Evidence the disease was “active” - qualifying me for lem
Evidence from an LP can be supportive of a diagnosis, but is not necessary - and damage can take place without you knowing about it / it resulting in severe symptoms (but neural reserve is depleted none-the-less). So I decided to trust my diagnosis and go with my neuro on this one - and to act hard and fast to save my brain and my spinal chord from more damage than it had already incurred.
For info, round 1 lem was easy. No real infusion reaction (rash and a headache and back fighting fit within 48 hours), no post infusion infections (and you are given anti-virals to help protect you in any event), no symptom flare-ups or issues with the steroids and, so far, everything is looking good on my monthly blood/urine monitoring (although it is early doors 0 and will be five years before I know whether Ive picked up a secondary auto immune). Importantly, my MS remains quiet. I have a scan in a couple of months to check whether there has been any “silent” damage over the last year - fingers crossed not and I am NEDA!
Very happy to talk through my experience with Lem if it is helpful
Katy x
Shift is great for advice on Lem. As if the Lemtrada, Alemtuzumab (campath) treatment of MS in UK and Ireland Facebook group. It is a closed group so you need to message admin for permission to join (explaining your interest) - and has several thousand members who have received, are going through or are thinking about Lem. People share their experiences - good and bad - and it is a good way to learn about the different protocols at different hospitals.
Kat
Thank you very much for your replies they are very informative and helpful in my decision making. Most people think there is no decision and that i am silly for even questioning having lamtrada, people think it’s so black and white, either don’t chose this treatment and quite possibly have a lot of disability or chose it and be fine, but it’s not that clear cut, it’s all the doubting as Katy mentioned if it’s is ms and the anxiety of the possible side effects, and also leaving my family for 5 days. Nevertheless all your replies are helping me be more positive about the prospect of this treatment so thank you.
Hi have you made a decision on treatment yet ? I have only been diagnosed 2 months but the neuro wanting me to start onext one of the stronger infusion treatments tysribi or lemtrada… I am swaying towards lemtrada. I have my appointment next week.
Hi, those were my 2 options also, but if i do choose i am the same as you and more towards lamtrada. I have not decided yet. I’m also newly diagnosed. Do you mind me asking what symptoms you are experiencing and also how many lesions etc you have? Have you had a lumbar puncture? I thought this kind of treatment was suggested for aggressive types of ms but it seems doctors prescribe it to a variety of people with varying levels of disease. I just am not to sure if i would benefit from other medications and have this treatment when my children are older.
To be honest they haven’t told me much they showed me pictures of brain and spinal cord and showed the leisions but never actually said how many maybe about 7 not sure… haven’t had lumbar puncture either… I’m back next Thursday though so will hopefully get more information I just have a book on dmd’s and she said the waye thinhs are looking will probably start me on infusion type… my head is all over… I have had numbness for couple years different parts of body but always disappears and dosent last long then in February my legs went and couldn’t walk more than 50 metres graduallyou getting better tho but I need a stick… how about you ?
I’m in the same boat, i have not been told much. Im glad your not waiting long for a follow up appointment. I’m still waiting. Never mind. I have a book on each they gave me too. As previous posts have said it is a good idea to read other people’s experiences, as the books don’t go in to that haha. Sounds like you have been struggling a while, mine started a year and a half ago and i have been having regular relapses and also need a stick, i find the pain from the cramps and stiffness very difficult to cope with, and also the numbness down my right side has caused me trouble with driving etc, I’m only 26 so dealing with my limitations is difficult. Depsite all this i still question if it is ms,but i think its because i have not properly discussed it with the doctor yet. What are your thoughts on lamtrada?
Not sure I think from what I’ve read it’s the best one I’m gonna have a talk with neuro next week about it. I’m 35 and have 2 teenage boys just wanna fight it with the best option available x
Hello,
If you haven’t found it get, Professor Giovanni (MS specialist neuro) hosts an excellent blog on MS treatments and the on-going research.
There is a helpful summary of Lem v Tysabri -
I wanted Lem as I liked the fact that it was just two rounds of treatment where as tysabri is on going. If I want babies in the future (jury is out- I’m getting married next year and we are not sure we do, but if we do im 37 so time is a factor) I’ll be protected from MS relapses whilst trying to conceive/ pregnant in a way I wouldn’t be if I had to suspend tysabri infusions. The fact that you may suffer a rebound reaction (relapses) down the line if you need to switch off of tysabri if you became jcv positive also deterred me. They were the reasons for my choice - in case it helps. Tysabri is supposed to be an excellent drug and has a good track record - and lots of people seem to swear by it - so it is great both are being offered.
Not wanting to confuse things further, you may also want to ask your neuro whether Ocrevus/ ocrelizumab is a possibility. It has just been licensed in the US for PPMS and is in final stage trials in the U.K for RRMS and PPMS. It is an infusion every six months - and is seen to have the same sort of level of effectiveness at reducing relapses as lemtrada but without the risk of a secondary autoimmune condition. Again, there is good commentary on the Barts blog on this option.
Really hope that is helpful rather than adding to the confusion. Just trying to think of the useful tips people gave me this time last year when I was newly diagnosed and trying to get my head in the game.
Leanne clark…I think the same, it does sound like a promising treatment and i hope if you do choose this treatment that it works for you! Maybe you can update on this post after your appointment next week as to what your neurologist says? I’m waiting for that appointment but i think i have to wait till my appointment in July :-\ i would be very interested as to what they say about the treatment and your thoughts after the discussion. I wish you all the best.
Thank you katy79 for your reply. Thank you for your thoughts on treatment and your reasons for your choice. Have you started treatment yet? I was also offered that ocrevus but he said he would not be able to offer that until a few months and he said its a clinical trial. I am going to ask about it again in my next appointment he said there were very little side effects from that one. Your comments are helpful and not confusing so don’t worry. I feel better from talking to people who understand and who can give their opinion it’s all helpful thank you.
Hello
I received Round 1 in August 2016 at Kings College.
Whole experience was absolutely fine. I’ll try and summarise the practicalities of the treatment and my experience as there seem to be a few people considering it.
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you have to be screened in advance of treatment to make sure you are healthy. Lots of blood tests, ECG and chest x-ray to test for tuberculosis. Ladies also need an up to date smear. All painless and easy enough
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At Kings you are treated as an inpatient. Other centres treat people as out patients. Merits to both. Being stuck in hospital for 5 days was rather dull - but the food was ok and my team at work brought be a subscription to netflix (breaking bad was my saviour - watched every season) and adult colouring books. I made a point of being up, showered and dressed before breakfast each day to keep myself feeling alert and human.
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At Kings you receive IV steroids for the first three days to help your body tolerate the lem (with the possibility of steroids on the last two days if you need them). At other centres you have steroids all five days as a matter of course. You are also given anti-viral tablets (which you have to keep taking for a month post infusion) and IV anti-histamine (as the lymph cells are destroyed they release histamine which people react to). Then the lem goes in on a very slow drip over 4 -6 hours. For me this was all painless. The cannula was initially on the back of my left hand and they changed it to the right after day 3 to give my veins a break. Again no drama (although helpful to have a plastic bag to keep it dry in the shower!)
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The advice is to drink LOTS of water to help flush the chemical cocktail through your body. I did this and had nothing worse than a mild headache on day one and a rash (which everyone seems to get - it is quite spectacular to look at but not too itchy) on days 3-4. Calamine lotion and more anti-histamine dealt with this. FYI - drinking litres of water whilst on a drip gives rise to practical difficulties - although I became very adept at wheeling the bloody drip stand to the toilet!
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You are monitored (heart rate, temperature, blood pressure) every half hour whilst you are on the drip and for two hours after. My results jumped around all over the place but I felt fine and the nurses weren’t concerned so nor was I. You also get blood tests everyday to check how you are responding and to look out for infections
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And then you go home. I went out for a walk around a local country park the next day (desperate for fresh air!) and had a cup of tea in the local coffee shop. I was a little unsteady/slow - and very conscious of germs (hand gel becomes your BFF) but it did me good. Next day (and every day after for the last 7 months) I’ve felt fine and strong. I was back at parkrun/work/gyming within two weeks (and felt like I could have done this sooner -but forced myself to take recovery time). I have since hit PBs on basically all my exercises (weights and running) so I’m feeling physically and strong and full of energy. And I’m hopeful that my second course of Lem will means I’ve given my best possible chance of staying this way for the future.
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Due to the infection risk, you have to go on an anti-listeria diet (bit like being a pregnant lady that can still drink wine!*) for a month pre-treatment, during treatment and for three months post to allow your immune system to re-boot. Post treatment you are also susceptible to infections (e.g. shingles) (hence the anti-virals) and flare-ups. I had no issues with either (although my MS has been highly “inelegant” as whilst I have multiple lesions all down my spine (save for c4 - not sure why that section escaped) and across my brain the only symptoms I’ve been aware of are numb toes for a few weeks - so I’m perhaps less susceptible to flare-ups than people with more “elegant” damage)
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Every month I have to pop back to Kings to give blood and wee in a pot. This is to monitor for the longer term side effects. So far so good - although I have to maintain this schedule of testing for 4 years post R2 so it is early doors. Every three months I have a catch up with my MS nurse to check everything is still good. I have an MRI scheduled for June to re-baseline me ahead of R2 - and am booked in for R2 in August (which is just three days of infusions).
But that’s just my experience. The Facebook group is a good place to get a broader range - good and bad - and advice on teh protocols at the different hospitals.
When I was first diagnosed and was really in a very sad, dark place David’s Campath Story gave me hope. Think this is why I felt so strongly that Lem was the right choice for me, even though I only had such mild symptoms. http://www.davidscampathstory.org/index.html
Tracy D’s Lemtrada journey is another great blog - and Tracy is very helpful at answering questions and has become quite an expert. She’s on Shift and the Facebook group.
And if you are looking for more recent Lemmie inspiration, try Ellen Marshall on TED or my new hero Mark Seacombe (both on the Lem facebook group)
http://tedxchelmsford.com/works/ellen-marshall/
Re. the Ocrelizumab trial, def worth talking to your neuro. The clinical trials at the moment are, I think, Phase 4 “open” trials - so you are guaranteed to get the drug and not a placebo. You should also get top level care and monitoring. I looked at this as an option but wasn’t keen on the need for on-going infusions and preferred the confidence the long term lemtrada trail data provided (in terms of efficacy against further relapses, normalisation of rates of brain atrophy and conversion of spms) (even if that came at a cost of added side effects - and there was a risk that I might need additional doses somewhere down the line).
- one side effect is my tolerance for booze seems to be shot. i am now a very cheap date (which keeps catching me out!)
Thank you jembob I will keep you posted… thanks for your information/advice Katy this has helped me a lot with my decision and I am 90 percent sure of my choice… one question how long did it take to get a date from your decision to go for it are we talking weeks/months ?
Thank you very much for your experience. It is very helpful i think after reading these posts and others i am ok with the treatment itself it’s just being admitted for 5 days when i have a 3 year old and a 1 year old which are never really away from me for very long so I’m just worried about the effects it would have on them but i suppose i can discuss these worries at my next appointment. I am just waiting for a letter with my lumbar puncture results about the o bands as i believe if the o bands are there that ms is most likely…Am i correct? Has anyone received lamtrada even with a negative result for o bands but with an ms diagnosis?