knotty 06/04/17
Last reply 2 months ago
Pros and Cons of Lemtrada?

Hi everyone, I will also do lots of research and thinking, but wanted to consult you all for your experiences – the good, the bad and the damn right ugly, please whether you are considering, are on the waiting list, on the journey or completed the treatment -what has been the best and worst for me to consider as to whether I switch to Lemtrada?

PLEASE respond as it may help others who are chewing over the options too.

I am currently on Plegridy and coping ok with it. I saw my MS neuro earlier in the year and he recommends I stay on this treatment as when he heard of my current my symptoms he decided I was doing really well, with no remission, so stay with the plan.

Interestingly, by comparison, I saw my neurologist this am and he has a different perspective. He thinks I have had some minor relapses and suggested an MRI (see my other post where I asked you all re what is normal for follow-up). He agrees with most and thinks once a year for an MRI is good, so he has booked me in for one. He also thinks prevention is better than cure and asked me to seriously consider moving up the fight to take on Lemrada.

I’m in two minds, my symptoms are mild and manageable currently (but I know this could change at any time), I’m also about to start a new job and they don’t know I have MS (another story), hence why your thoughts and experiences will be invaluable to me.

I’ve thought I will await the outcome of the MRI before making the final decision but in the meantime please share your story


Knotty xx

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.

1 year ago

I’d have it like a shot. I broke down when I was told there was no clear new activity on my MRI, because I knew that meant no Lemtrada. I will be asking for it again next time I see my Neuro.

I decided I was happy with the increased cancer risk, thyroid disease and having to be very careful about what I ate and hygiene in the kitchen etc I believe most of the risks can be controlled.

I suspect it is too late for me now, but that’s the problem with ms, you’ll have no idea what would have happened if you had made a different decision.

Best of luck with whatever you decide xx

1 year ago

Different neurologists will have different opinions. My neurologist wasn’t keen on Lemtrada. I was diagnosed in October last year and have been on Tecfidera for a few weeks, so I can’t offer any advice from experience.

One thing to bear in mind is that Lemtrada permanently changes your immune system. If it doesn’t work well for you, you may not be able to take other DMTs afterwards. Also, if a better DMT becomes available in the future, you may not be able to take that.

1 year ago

I’d love to see some evidence of that statement from a reputable source …….. 🙁

Lemtrada does NOT permanently ‘change’ your immune system, it’s a monoclonal antibody which targets specifically CD54 bearing T & B Cell Lymphocytes and depletes them. Over the course of the following year these T & B cells return to your system. When the T&B cells grow back they seem to have forgotten that Myelin was their favourite snack food and they stop munching their way through it – or sometimes they remember and start scoffing away again and then you can have a 3rd round or chose something else.

There is NOTHING to stop you having other approved treatments post lemtrada if it doesn’t work for you. There is HSCT and Ocreuvus which will both likely be fully approved soon and once the approvals are through having had Lemtrada does NOT preclude people from having them.

Once you’ve had Lemtrada though it does tend to mean they don’t want to accept you onto new trials….. but then if your MS is dormant, you’ve got no activity or new lesions …… well you’re no good to them on a trial anyway

1 year ago

Going to have to disagree with @tracyd on the assumption that Alemtuzumab (lemtrada) does not have a permanent impact on immune constitution. A recent post on Bart’s MS blog (a fantastic resource) looked at the blood counts of a trial on patients with rheumatoid arthritis.

“In this report, the study looks at the bloods 20 years after alemtuzumab and it is clear that the cells numbers in the bloods do not revert back to normal. The immune output of cells relates to bone marrow and thymic output and with age these drop. Compared with controls the alemtuzumab cohort had significantly reduced CD4+ and CD8+ central memory T-cells, CD5+ B cells, naïve B cells and CD19+CD24hiCD38hi transitional (putative regulatory) B cells”

The report did go on to say that this difference did not appear to have an impact on immune system competence. Use the Bart’s blog or Google scholar to be as informed as possible. The current thinking of progressive neurologists is to hit MS hard and fast. Time is brain. lemtrada is a revolutionary drug but the decision to take it should be a carefully considered one as it is not a decision you can go back on

All the best in your journey.

1 year ago

Hi @tracyd
T-cells seldom if ever return to baseline after lemtrada, and those which return are not as potent as before (displays signs of ‘immune senescence’ whatever this means.. ). So I’m afraid the changes are permanent

1 year ago

I am about to have my second round of Lemtrada in May. The infusion week first round wasn’t what I expected. You hear the information and get the worse case stories but you don’t really get it till its happening. Some people I’ve talked breezed through it easy but most didn’t enjoy it much. You can get rashes, headaches, muscle aches etc. In 2008 I had a bad relapse which resulted in seizures … I havent had one due to epilepsy medication for a while but the Lemtrada triggered a seizure for me. I struggled with fatigue to the point that I couldn’t walk and had trouble keeping my eyes open. I had steriods all 5 days as it perked me up and prevented the rash I got on the first day.
Some people say their lesions have shrunk but I’m content with just been stable. I haven’t had a relapse since I started. I still struggle with fatigue a bit more than before I went on it but otherwise I’m good. Every month I have my tests done and so far so good.
It has its pros and cons but so do all of the drugs.

1 year ago

The term “Immunosenescence” was mentioned above. Here’s a definition :-

“Immunosenescence refers to the gradual deterioration of the immune system brought on by natural age advancement. It involves both the host’s capacity to respond to infections and the development of long-term immune memory, especially by vaccination.”

PS I’m no medical expert, but Google is! 😉

1 year ago

I have been subscribed to the Barts blog and am very familiar with it’s publications.

The ‘partial’ copy and paste from the following article :

Taken in context with the full article the ‘it changes your system for ever’ statement on it’s own is misleading and an unnecessarily scary thing to cruely drop on people.

As for CD4 cells ….. pretty irrelevent thing to count unless you have HIV 🙂

Wednesday, 1 February 2017

What maybe the long term effect of alemtuzumab in MS…lets look at arthritis

What happens in the long-term after alemtuzumab. The simple answer is that we do not know?

Based on the long-term Cambridge data there are a few people that have converted to SPMS, and according to ProfC from Cambridge these people tended to be those who started DMT later in their disease course and those that showed less responsive to treatment.

CAMPATH-1H was tried in a miriad of conditions before the two Cs from Cambridge tried it in MS.

In this report, the study looks at the bloods 20 years after alemtuzumab and it is clear that the cells numbers in the bloods do not revert back to normal. The immune output of cells relates to bone marrow and thymic output and with age these drop. Compared with controls the alemtuzumab cohort had significantly reduced CD4+ and CD8+ central memory T-cells, CD5+ B cells, naïve B cells and CD19+CD24hiCD38hi transitional (putative regulatory) B cells.

Compilation of the primary causes of death from the entire cohort from 1994 to 2015 showed overall 37 of the original 53 patients who received alemtuzumab had died. The predominant causes of death were cardiovascular/atherosclerotic (n = 12), infection (n = 11), and malignancy (n = 8). Other causes were non-malignant gastrointestinal tract perforation (n = 2), pulmonary fibrosis (n = 1), dementia (n = 1), upper gastrointestinal bleed (n = 1) and primary sclerosing cholangitis (n = 1).

It is evident that once you have alemtuzumab your white cell profile changes for ever. This in part because as you age your thymus where T cells are educated, atrophies. So once you deplete after this the immune machinery is not working the same as it was before. In the animals too, after imune depletion the cell levels dont return in the same way. However this is also part of the re-booting process, that helps alemtuzumab switch off MS

Immune reconstitution 20 years after treatment with alemtuzumab in a rheumatoid arthritis cohort: implications for lymphocyte depleting therapies.Cooles FA, Anderson AE, Drayton T, Harry RA, Diboll J, Munro L, Thalayasingham N, Östör AJ, Isaacs JD. Arthritis Res Ther. 2016 0;18(1):302

BACKGROUND:Alemtuzumab, an anti-CD52 monoclonal antibody, was administered to patients with RA between 1991 and 1994. We have followed a cohort of recipients since that time and previously reported significant delays in immune reconstitution. Here we report >20 years of follow-up data from this unique cohort.
METHOD:Surviving alemtuzumab recipients were age, sex and disease duration matched with RA controls. Updated mortality and morbidity data were collected for alemtuzumab recipients. For both groups antigenic responses were assessed following influenza, Pneumovax II and combined diphtheria/tetanus/poliovirus vaccines. Circulating cytokines and lymphocyte subsets were also quantified.
RESULTS:Of 16 surviving alemtuzumab recipients, 13 were recruited: 9 recipients underwent a full clinical assessment and 4 had case notes review only. Since our last review 10 patients had died from causes of death consistent with long-standing RA, and no suggestion of compromised immune function. Compared with controls the alemtuzumab cohort had significantly reduced CD4+ and CD8+ central memory T-cells, CD5+ B cells, naïve B cells and CD19+CD24hiCD38hi transitional (putative regulatory) B cells. Nonetheless vaccine responses were comparable between groups. There were significantly higher serum IL-15 and IFN-γ levels in the alemtuzumab cohort. IL-15 levels were inversely associated wth CD4+ total memory and central memory T cells.
CONCLUSION: After 20 years the immune system of alemtuzumab recipients continues to show differences from disease controls. Nonetheless mortality and morbidity data, alongside vaccination responses, do not suggest clinical immune compromise. As lymphodepleting therapies, including alemtuzumab, continue to be administered this work is important with regard to long-term immune monitoring and stages of immune recovery.

1 year ago

From the report – ‘It is evident that once you have Alemtuzumab your white cell profile changes for ever.’

How is this misleading? What is misleading is trying to argue against the scientific evidence. To say that it does not cause long term effects on the immune system profile is simply wrong.

1 year ago

Also your comment about CD4 cell count being irrelevent and HIV is questionable.

2 months ago

Oh gosh, now I’m even more confused…

2 months ago

I was diagnosed Nov. 2007 and started Avonex in 2012, which stopped working in early 2015. I was so happy to be eligible for Lemtrada and all I can say is that as I hobbled into my 1st infusion in March 2015, on a walker, I was desperate for anything to work. To be honest at the time I did not consider all the side effects to be as bad as the MS. Both infusions went well and I was back at work the Monday after. Special diets were followed and care with germs was taken. I know I’m not ‘cured’ but it was the best (not fully considered) decision I have ever made. I walk unaided but do tire after a while so planning and thought is required before going anywhere new. I drive, work full time, am a single parent with not much of a support system or social life but I do credit Lemtrada with giving my life back. It is not glamorous or exciting and I should probably be living it up more but I am eternally grateful…

Everyone’s journey if different and I can only wish that Lemtrada works as well for everyone who makes the choice as it did for me. x 🙂

Post Comment

You must be logged in to reply to this topic.