Forum

Lemtrada

Is anyone currently on Lemtrada ?.

I am due to start my first infusion next week as an out patient.

Hi Keels

The best place to get feedback on Lemtrada is probably https://shift.ms/ because many of the users of their forum have had Lemtrada. Only a few on here have, although if one of them sees your post, I’m sure they’ll answer.

Sue

Hi Keels

I had Round 1 starting 7th August so I’m now 6 weeks post.

I was a day patient too, it’s very tiring travelling too and fro, how far is your journey?

The infusions themselves are ok, the worst part for me was the first couple of anit-sickness infusions that they pump in, the nurse called it loopy-juice, and wow…

If you have any questions I’ll do my best to answer, of course we all react differently to meds so what I experienced will be different to what you may experience.

Good luck, rest up and don’t get scared, it’s really not that bad!

Hi, I had round 1 last September I’m due to go in at beginning of October for round 2, I was an out patient for round 1 and same again this time round. Its been the best decision I’ve made.

Ah Thank you so much for coming back to me.

I guess l am scared about how l am going to react to treatment as feeling relatively well at moment.

l have only just managed to get myself back to work full time, after having a major relapse and enjoying relative normality of work, so sad l am going to be off work again so soon.

l only have to travel 10 mins to hospital every day which is good.

How are you feeling 6 weeks after treatment and how tired did you feel during treatment? My ms nurse has told me l need to take 4 weeks off work to recover, not including 5 days l need to spend in as out patient having infusion.

Hello, thank you so much for coming back to me. I guess you believe being on Lemtrada has really benefited you. Would you mind if l ask how so?

Thank you. I will have a look now checked before and couldn’t see many comments, can see lots now though.

I was on crutches before lemtrada and having to have a nap every afternoon, since lemtrada I don’t need naps any more and I am able to walk without using a crutch I still need to sit down regular but I feel miles better. I was also having severe relapsing often where as I’ve had a minor 1 since lem. I hope you get good results from it too x

Yes, I had the same amount of time off work, although I did pop in for a few hours during week 2 to do the monthly payroll (very important!!) and also started a phased return to work in week 4 just to start catching up.

I work part time - 21.5hrs a week for a small business and have a lot of flexibility with my hours, my lovely employers are happy to let me decide how many hours I do on the 3 days I’m in. Now in week 6 I am almost back to my usual hours, will have done 19 hours this week.

The week of the infusions wasn’t too bad for tiredness, I had a lift each way - we’re about 40 minutes drive from the QE in Birmingham, then 15 mins to park and get to the ward. At the end of the week I was more tired that usual, also my legs were very swollen and I’d gained five pounds in weight. I put that down to the 10 litres of assorted liquids pumped into my veins over the 5 days. It took less than one week for that to go back to normal.

Since then I have found I’m getting steadily weaker in my legs, I now find it hard to walk even a few yards without pain in my mid and lower back and my legs, although I understand that is common and starts improving after two-three months. Fingers crossed. It’s a nerve pain so a deep burning pain and mostly it goes off again if I sit down. I describe it like the ‘burn’ you get when trying to walk up a very steep sand dune.

Thank you so much for coming back to me.

l am due to have treatment at the Q E too.

l am try to be positive about treatment and looking it as short term pain for long time improvement. Not looking forward to time off work though. I have lots of books and shows l am watch on net flux though.

l had no idea about any nerve pain you may get fingers crossed this is only a short term thing for you.

Kindest Regards

Keels

Gosh that’s wonderful news re improvement in your mobility. I didn’t realise it would help with any of those issues l may have.

l am all set for Monday now. House have been cleaned too with an inch of its life lol.

Have a wonderful weekend.

Kindest regards

Keels.

Gosh that’s wonderful news re improvement in your mobility. I didn’t realise it would help with those issues so much.

l am all set for Monday now. House has been to within an inch of its life lol.

Have a wonderful weekend.

Kindest regards

Keels

Good luck for tomorrow Keels, you’ll be in good hands, the team at the QE are very good.

Thank you so much for your best wishes for tomorrow.

This site has really touched me how complete strangers take the time to offer support and share their experiences.

Kindest Regards

Keels.