Forum

Disease modifying drugs

Hello

Looking to see if anyone currently on Lemtrada please.

l am newly diagnosed with having ms despite having the symptoms for 6 years.

My MRI scan shows l have rapidly developing Ms.

My consultant has told me not to worry too much about this label. Of course l do and l have no idea what this label means?

Initially l was put forward for Tysabri l can’t go on this as my Js levels are too high, so Lemtrada has been suggested.

hi keels

there is a lady called kate who is a big advocate of lemtrada.

it really sounds good too.

i’d advise you to grab it with both hands.

carole x

Hi Carole! - looking for me? :slight_smile:

Keels,

Apologies for the cut and paste - bit of a busy day today - I’ve just put this on the other thread re. Lemtrada. Happy to respond to any questions. Good luck!

Hello

I’m a Lemmie - just about to go into Round 2 in August. So far, so good. I had no problems with the Round 1 infusion and recovered quickly (with no infections, pseudo relapses etc etc).

My latest MRI showed that there has been no progression in my disease over the last year (no clinical relapses and no new lesions). Whether this is due to the drugs or would have been my outcome in any case, I will never know - but my first scan (March 2016) showed multiple lesions and a second scan (June 2016) showed one new one despite no new symptoms - so it has definitely slowed.

It is far too early to know whether the Lem will have given me a secondary auto-immune disease (one of the scarier side effects) - but the odds are on my side, I’m monitored monthly to make sure any issues are picked up quickly to they can be dealt with - and I’ll cross this bridge if I ever get to it. I’ve decided to deal with the autoimmune disease I have today - and worry about the one I may get tomorrow if and when I get it.

Apologies for not writing more (busy day at work and want to make a gym class at lunch!) - if you can search under my user name I’ve written much fuller accounts of my treatment on various threads before. Also, very happy to respond to any specific questions. I’ve just plucked this thread off of my activity line which may be helpful

https://community.mssociety.org.uk/forums/everyday-living/not-sure-if-la

Useful resources are Shift MS (lots of Lemmies on there), the Lemtrada/alemtuzumab for treatment of MS in UK and Ireland Facebook group and detailed blogs by people who have received treatment (try David’s Campath journey, Tracy’s lemtrada journey, cycling with MS). Also - for absolute inspiration

Mark Seacombe is fundraising for Multiple Sclerosis Society

http://tedxchelmsford.com/works/ellen-marshall/

Good luck!

K

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Hoping this link has worked…

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Thank you for reply. Sorry have not been on here for a few days have been so tired with work.

I will have a look now x

Thank you so much for your response.

I will have a look at the links now.

Just seems so much to take on board, l am a single Mom with two girls so just trying to find the best opinion which is going to keep me well for as long as possible and working.

Anything can help with that is a bonus.

Kindest Regards

Keels x