Last reply 1 year ago
Starting lemtrada.

Hi everyone. I am about to start my lemtrada treatment and am feeling quite nervous about the overall outcome. One of my biggest concerns is how long I’ll be unable to work, as I’ve just recently started a new job that I quite like. Although I disclosed having Ms with the employer I did not disclose what my week off (for lemtrada)would be. My “lemtrada team” are adamant that I’ll bounce back fairly quickly and not to worry. I was just wondering if anyone could give me an idea of how long they were resting for? Did anyone go straight back? I do know it’s different for all but some idea would be helpful. Thanks heaps.

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1 year ago

I work in an office and was advised to take 2 weeks off to recover. The first week off following treatment I felt really tired and was sleeping 10-12 hours a night not my normal 7/8. I was adamant I would go back in the second week but as I still didn’t feel 100% and it was November time so the flu started to spread around my office I decided that it would be best to take the full second week off too. My first week back to work was slightly tiring but only because I had to get up early and use my brain again, rather than sitting at home watching trashy TV.

I did log onto emails in my second though so I was able to see what was going on and get back to people if I needed to.

Hope that helps 🙂

1 year ago

You really should let your employer know about the treatment your getting. Lemtrada basically reboots your auto-immune system and the recovery time is different for everybody. I had Round 1 of Lemtrada back in the first week of February and felt good enough to go back to work right away but still had a week of rest, but when I went back, that’s when it really hit me about how much I’ve put my body through. Took only 1 week of work before I knew that I couldn’t continue the route I was going because I was getting tired, breaking down in tears, depressed, had trouble walking and just fed up. I work in retail and even though its only part time at 20 hours a week, that was still too much and I’m now taking breaks. Go back when you feel ready to go back, as great as MS Nurses are, they can’t tell the future and only you will know when you should go back, but when you do go back, take it easy and don’t end up like me, I got overconfident in what I could do and ignored my body when it needed more rest and now I’m paying the price.

1 year ago

Hi @mikesimpkins

It’s all individual, but I had to take three weeks of sick leave after both rounds.
Even after then I felt very tired for about 1 month after
But again, it’s very individual and most people recover much faster

1 year ago

I’m due for round two in April. I had 3 full weeks off after treatment last time. I probably could have gone back after two but the extra week meant that I went back full time without any problems. If I’d gone back earlier I think I’d have had some problems and needed more time off. I would tell your employer and just explain how important this treatment is, if they already know about your MS they should support your efforts to manage it.

1 year ago

Hi @mikesimpkins, you have probably already realised from the comments above how much the recovery time varies between individuals. There is no hard and fast rule and I think the advice given varies between hospitals. It probably also depends on what shape you are in before the treatment, how you react to it, what job you do and what else you have going on in your life.
I was in good shape before lemtrada (neuro on day 1 joked that I was far too healthy and he would not have given it to me if he had not seen my MRI) and I got on ok with the treatment. I do an office job and was advised that I should plan to take one week off after treatment and that is what I ended up doing. However, I know other people who then found they needed longer, whilst my MS nurse told me she did have one patient who went back straight away. She gave me some good advice, which was listen to your body, but even if you feel exhausted try and get out for a short walk each day so you start building back up again.
I found that in the first week I needed lots of post lunch siestas and early nights and I certainly would not have been capable of doing my job and was glad I was not under pressure to go back. My energy levels gradually picked up through that week but to be honest I was nervous about returning to work the following Monday. I did manage it, although in the first week back I had a few days when I left early, went home for a late afternoon nap and made up time in the evening. I didn’t have a formal return to work plan, but just agreed with my boss that I would flex depending on how tired I was. I also ended up driving rather than cycling to work to help conserve energy levels. Essentially I found I could do it, but all my energy had to go into being at work. I would say that, although I’m told nobody else noticed, I had around three months where I felt off the pace compared to usual. I have had to make some compromises and slow down a bit, but am taking the view that it is like a pension- if I invest a little bit of time now, it will buy me many more years of good health in the future.
I only told my immediate team, but I found it was helpful for them to understand my limitations during those early weeks post-treatment. Also I was keen to protect my depleted immune system from office germs, so it was good for them to know to keep away from me if they felt unwell and if lurgey was really doing the rounds I stayed away and worked from home. If you have disclosed your MS to your employer, I would encourage you to let them know more about the treatment so they can support you appropriately.
Mind set is an important element – if you want to go straight back and your MS team are encouraging that as being realistic for you, then definitely have that as your expectation, but just be prepared to flex things depending on how you are feeling.
Good luck and let us know how you get on!

1 year ago

All very worthwhile advice. Just play it as the body let’s you. Did anybody have weight loss during the treatment?

1 year ago

The time off post treatment thing, like everything related to MS is different for everyone.
With both rounds 1 & 2 because I work in an IT role and can work remotely I WFH (Worked from Hospital) during treatment. after round 1 I planned to WFH (Home) for a week then back into work after that – for Round 2 I simply went back in on Monday and carried on as usual.
The best advice I can give is plan for the worst and hope for the best. Let your hygiene OCD go into high gear and Anti-Bac everything and everyone you can.
I found it really easy to just carry on as normal after both rounds.
If you have questions and would like to talk you have a friend request I’m happy to share contact details on PM xxxx

1 year ago

I’ve just come out of R1 last week and I felt OK at first. When you feel good you want t keep going but my neuro (had to go back for blood tests yesterday) told me to take it easy for 2-3 weeks. Truth is that I’m a little wobbly in the legs and a little off and have to take more rests. I was an in patient so it also depends on how much sleep you get due to the steroids and, if staying at the hospital, general noise and other patients. If yes to either, and you can’t get sleep let them give you a sleeping tablet. It certainly helped me, along with eye mask and ear plugs. Do you have an office job where you can sit down? Do you work with others? They might have colds etc. All things to consider…
Re weight loss, the food was too good in hospital (no joke!) but when I came out I lost my appetite briefly and weight dipped a little. X

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