MS treatment

[nonetcurtains]

Last week I had my first 5 days of Lemtrada, after my neuro felt that Plegridy was no longer working for me.

It went well on the whole, I got the rash which was effectively dealt with by an additional Hydrocortisone infusion for a few days, and I felt very tired by the end of each day but put that down more to the travelling to and fro.

I also had an infusion of an anti-sickness drug which made me very spaced out on the first couple of days, but my body seemed to quickly adjust to it so not so bad on days 3 - 5.

Calculated that by the end of the week they'd infused about 10 litres of fluids into my veins, - my legs were swollen and I'd gained about 5lbs. By the Friday i needed to pee urgently every hour or so and that carried on till Sunday, but by then the swelling had gone down and I'd lost the weight.

No other immediate side effects yet, just my legs are a rather weak; I also have arthritis in my knees and it seems to have had a detrimental effect there. Will keep an eye on it.

Hi is this a pregnancy group? I'm confused. I'm looking to talk about pains early in pregnancy but can't find any info, but seen autoimmune diseases and ms and I also have ms and am on lemtrada 🙂 I've completed both rounds (14 months post round 2) and am 9 ish weeks pregnant x

Hi Issie, no not a pregnancy group, it's in the Autoimmune Diseases topic.
The pregnancy topics can be found by going into Talk Topics, then click on Becoming a Parent, then select the sub topic you want.
I don't think there one specifically for MS and pregnancy.

Hi nonet, how are you? Lemtrada is quite a heavy duty treatment so listen to your body and take your time with your recovery. I found that I felt ok for a few weeks after the initial recovery, but that was the steroids keeping me going! After that I felt tired for a good while (months not weeks). It's a good treatment to have though, worth the disruption. Wishing you luck.

I don't think there one specifically for MS and pregnancy. There is no way Lemtrada would be administered to a pregnant patient!

OP - please speak to your MS specialist nurse about any concerns you have tomorrow. She will have supported lots of other patients through the treatment. Don't wait until your monthly bloods to have that conversation.

I'm doing ok thanks, the weakness in my legs and the pain in my lower back and left leg/hip/knee got steadily worse till I could hardly walk, even furniture surfing at home, but seems to have reached a peak and I've found this week it's slightly improving. I can still only do about 5 minutes e.g. washing up, then have to sit down again to rest!

Other than that, no other side effects so far.

I saw my MS nurse for my first 4 weekly checkup. She said they won't start checking my lymphocyte levels till after round 2 - bit disappointing really. Still, overall I'm glad I decided to go with Lemtrada. No regrets so far!

Thanks for the update, OP. I'm glad you're recovering, but are you sure that what you went through wasn't another episode?

Please keep a note of what you suffer and when, as it will help your consultant to support you. There will of course be times when you need urgent care, so don't delay in seeking it

Ooh i've just found this board. Autoimmune category wasn't here last time I looked, so i'm guessing things have had an overhaul.

I just wanted to give you my experience of Alemtuzumab (Lemtrada). I had it back in 2008 when it was still a trial drug called Campath 1H. I then had a second dose in 2009. I have RR (that was diagnosed as aggressive in 2005), but put off any treatment whilst we tried for and had DC, hence not having it until 2008.

I saw my neurologist yesterday and my last MRI was in December, they have confirmed that I haven't relapsed, or the MS hasn't progressed, since then!

Nine years without a relapse is unheard of for me, before the treatment I was relapsing every month.

I just wanted to give you my experience of a positive effect that it has had.

(btw I am a wheelchair user, but this is NOT because of the MS - LONG story - but ultimately the MS has kept me in it as it 'got me', whilst I was off my feet).

Hushabye that's really fantastic. Thank you for posting your experience of Lemtrada. I'm hoping for a positive result too. I hadn't realized it was available that long ago.

Good luck for the future, here's hoping you've seen the back of relapses now.