@Robaczek1

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Robaczek1

Lemtrada

Any news updates about lemtrada users plz ☺

gpeps

@gpeps

I'm on lemtrada. Started in Jan. So far so good. Are you at decision time?

Robaczek1

@Robaczek1

Yesss im about to but i don't know when yet still waiting ....soo how you doing thanks for replying. ☺

gpeps

@gpeps

Hope you find out soon - added uncertainty is the last thing us MSers need! Yeah, doing good. The week of the treatment went fine. I was a bit nervous about that, but all was pretty straight forward. MS has been pretty quiet since so I'm happy. Obvs can be different for us all, but no news is good news right? Where you based?

Robaczek1

@Robaczek1

Oohh good to hear that ☺☺im in london (morden) im bit scare but i think all the medication is harmful to the body?sooo it's time to try something ...i don't know when but i hope soon i read a lot of good feds about lemtrada Take care ☺☺

Margarita

@Margarita

I'm waiting too...we can be nervous together :) Trying to focus on the fact that, wherever the treatment itself falls on the unpleasant-to-awful spectrum, it's what's necessary to take back control of my brain. It's a strange feeling going up against your own immune system, but if it insists on misbehaving it deserves to be put in a time out!

Robaczek1

@Robaczek1

Yesss Margerita let's be nervous together ?with hospital u are?☺☺

Ahmed

@Ahmed

Waiting here as well. It was all approved and my infusion will be in late November at Queen Elizabeth hospital. I took 3 weeks of work to have a good rest before and after. My Neuro was reluctant at the start so he asked for a second MRI scan. It showed 8 newer lesions, only 2 months after my first relapse. 2 of them were in the spine. Anxious like everyone else and just counting down the days.

Robaczek1

@Robaczek1

Thank you for updates i think lemtrada is one of the best soo far... only my neurologist is not very helpful so i have to help myself TAKE CARE ☺☺

Margarita

@Margarita

@robaczek1 I'll be at King's College, so in the same region :) @ahmed My first MRI was only done because my family kept insisting (mother shares the same GP and doesn't understand the word "no"). He thought it was very unlikely to be MS, but ended up ordering a scan to shut us up. Turns out I have a whole bunch of lesions with a large one on the spine too. At least the activity is good news in our cases - it gets us treatment!

Robaczek1

@Robaczek1

Yes me too kings college but still i don't know when because my neurologist his taking his time ????

Monica2015

@Monica2015

Hi @ahmed, just seen this, congrats on receiving approval for Lemtrada, and well done on your brave choice! I start mine tomorrow....can't believe it's finally happening, a huge mixture of relief and nervousness as never stayed in hospital despite my 70 relapses.. Not my thing at all. Had requested that I be an out patient, as I live so close to Charing Cross, but this was deemed unacceptable. Made all the necessary arrangements, including sending my son off on a school trip to France (thankfully now half term), and my husband is working from home to bring food in for me (I'm a huge eater and am concerned I will not have sufficient food in hospital) and need to maintain my weight, as have had a lot of muscle atrophy from the relentless, numerous releases this year. I know this treatment is a necessary evil (perhaps sounds negative, but didn't mean it be so) but am still feeling like I'm diving headfirst into the unknown... Hard when you are a bit if a control freak. Guess I just need to let go....

Monica2015

@Monica2015

@gpeps, were you fully functional before treatment? Thanks, Monica2015

Robaczek1

@Robaczek1

All the best Monica ☺☺☺give us some updates if u can thanks ☺☺Take Care ☺

Monica2015

@Monica2015

Thank you @robaczek1, I definitely need it! Will try to... ☺️☺️

Margarita

@Margarita

All the best, Monica - best of bravery though, luck has nothing to do with it lol. As a fellow control freak, I like to think of it as taking charge of our MS to the best of our ability, our weapon of choice being the biggest baddest beast modern medicine has to offer!

Ahmed

@Ahmed

Good luck Monica. I expect some uncertainty from your part but you will get over it hopefully.

Monica2015

@Monica2015

Thank you @ahmed, it's all an unknown quantity but on the positive, at least I'm finally taking something that might, just might, prevent progression. It's all in the lap of the Gods now.

Robaczek1

@Robaczek1

Don't worry Monica all lemtrada lovers are with you ☺☺Take care☺☺

Robaczek1

@Robaczek1

Thanks Orlendo27☺☺

Monica2015

@Monica2015

Thank you so much for your sentiments @robaczek1 and @orlando27 for all your helpful, reassuring and inspiring words. I was diagnosed 11 years ago myself, and despite recovering from my previous 66 relapses, this year I have become more and more immobile from just 4 relapses due to no respite in between... For the first time, I have actually felt completely like I'm heading towards a wheelchair after 3 occasions of being one this year. It's been quite a sobering experience and made me realise that I had totally underestimated this disease (as George Jelinek had warned me about when I tracked him down and called him in Oz). Please God ?? I have some of the improvement that you and others have had. Thank you for sharing. ☺️☺️☺️

Monica2015

@Monica2015

@orlando27, hi. Came out yesterday and feel that it went as expected. The rash appeared early on (day 2), but that was contributed to by a very stressful situation with an extremely ignorant fellow (non MS) patient whose remarks I will not give credence to by repeating. I have had rather a lot of shortness of breath and racing heart, esp today plus leg symptoms appear to be significantly worse than previously. Can anyone advise what to expect next? Unlike others, I do not seem to be sleeping copious amounts ( no doubt due to watching Breaking Bad back to back!) @tracyd, how long did you keep up drinking fountains of water for?

Monica2015

@Monica2015

Thanks @sandwich. Will do re the water. Did your symptoms all recur or just the eyes? When and if did you feel like you had turned a bit of a corner?

Robaczek1

@Robaczek1

Monica how is your legs??im so scared of this lemtarada ...???all the best my Dear.

Monica2015

@Monica2015

Hi robaczek1, Thank you for your concern. I'm sure that's it's transitory, but whilst I can still walk, they are much more painful, heavy, numb and stuff than when I went into treatment. To be fair, I wasn't taking all the meds I should have been so maybe partly my fault. But I'm really not a pill popper type of person... But am sure this too will pass and the benefits will outweigh the SEs.

Monica2015

@Monica2015

Thanks @sandwich. I guess our situations are extremely contrasting then, given I'm on my 70th relapse. But I'm in awe of your quick thinking decision to take Lem so early on!

Robaczek1

@Robaczek1

Thanks Monica ?im so in stress now im so scared if i lost my legs and i become weak. ..at the moment i have my right leg not very good but still i walk normal and no problem just when i walk a lot then i fell pain and tired .

TracyD

@TracyD

Hi all I'm now in week 23 post treatment. I was very lucky that within 6 months of being diagnosed I got Lemtrada as my first treatment. I asked for it, I argued my case for it and agreed completely with the regime for blood tests every month for the 5 years after the first treatment. As far as how I was before - in those 6 months I had 6 big relapses. I went from a few lesions to over a dozen in my brain and spine. It targeted my sight and my legs so very fast that at times I was using a stick or on one occasion wheelchair. I had cog fog, fatigue, complete sensation loss to almost my entire body, bladder urgency and there were days when I would wake up and my eyes simply refused to work properly. Now - everything is back how it should be - my thumb and first two fingers of my left hand are still completely numb apart from the constant electric shock sensation when I touch or try to hold something, but it's annoying and I'm okay with that. I still drink my water every day, I follow the regime I set up for myself before treatment and I'm LIVING life again, not just existing in it. I can't praise the treatment highly enough, and nothing about it scares me as much as what MS was doing to me before I had it xxx

TracyD

@TracyD

@sandwich I didn't have one. It really depended on the day, the ones where my eyes refused to work it would be regarded as high when they did nothing at all. Same with the legs when I was on a stick or the one time I ended up in a wheelchair, again high but it came and went so I just got on with everything while I waited for my little vial of miracle juice to be pumped into me :) xx

Monica2015

@Monica2015

Thanks @sandwich, I was probably a little crazy, as I had relapse after relapse, but I did have short windows in between when I was fully well. I held on to those and almost convinced myself that this was my norm. Each relapse took around 6-8 weeks to recover from, so I was ill most of the time. However, for example in between at times I was climbing hills in India! Like in Jan 2013. Unfortunately, after India, I must have picked something up as I had far few clear remissions. This year, I have had 7 relapses back to back and each has merged into the other with no real respite. It was at this point, I decided to opt for Lemtrada. My neuro had always advocated tysabri but I felt that it was not for me. He was shocked at my choice but relieved I was opting for some form of treatment. I'm praying that Lemtrada is. Time will tell.

Monica2015

@Monica2015

Thank you @sandwich, just seen your post as do not receive email notifications. Very kind wishes. How are you doing now as didn't you take Lem fairly recently?

Robaczek1

@Robaczek1

Thank Monica for your nice words im om im trying my best to get used to MS but is hard...