@Susanmayer81

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Susanmayer81

Lemtrada (awwwww)

Hi everyone, I'm Susan and I'm new here. You can read my story on my page...making long story short I've been on Gylenia soon after my diagnosis in 2013. But still, two months ago turned out that my yellow/white friend is not enough for me. So my Neuro told me to try Lemtrada...well guys, I'm puzzled. I mean Lemtrada is surely a milestone for MS research but I'm here at 1 am asking myself if it's worth the risk. Anyone who wants to share their experience with me? Thanks and sorry for bothering.

amybeets05

@amybeets05

If I could try it, I would in a heartbeat!

PV04

@PV04

I had Lemtrada in December. Got over it pretty quickly. Was symptom free pre and post infusion. Time and mri will tell if it made any difference. But feel better mentally as have hit ms as hard as I can

Monica2015

@Monica2015

@susanmayer81, your Neuro is privy to your MRI scans and observations of your clinical symptoms, which may explain their suggestion. If there is any doubt that your existing treatment is failing in it's aim, then I believe that serious consideration of Lemtrada is warranted. I am in @Orlando27's position, and the benefits are not as readily apparent for me 5 months post treatment. However, I believe they are becoming more evident, albeit rather more slowly than hoped. I echo his comments re @tracyd's account. Good luck!

Susanmayer81

@Susanmayer81

Thanks guys for these prompt replies! Still I have more questions to ask if possible. My Neuro pushes for Lemtrada, my parents believe in science and progress. My friends feel useless and as for me...well I feel standing completely alone in front of a choice which is not actually a choice ( meaning gylenia's not working at its best so I have to switch to Lemtrada, sooner or later ).Problem is: other than (and apart from) pre and post infusion issues, what scares me the most is whatever has to do with possible long term 'collateral damages' (kidneys, thyroid and everything one can read in the patient leaflet). How you ever wondered about that? Also, those of you currently on it could please describe me briefly which are the most common consequences over the five days of infusion, and after? What did you experience? Thanks and again, sorry for bothering.

Susanmayer81

@Susanmayer81

Also, @monica2015 and @orlando27 what do you mean by 'benefits not as readily apparent' after 5months?

tessa

@tessa

@susanmayer81 Hi there's a very good blog on line about a guy who had Lemtrada ...davidscampathstory.org Worth reading perhaps Goodluck

Susanmayer81

@Susanmayer81

Thanks Tessa, I'll definitely have a look at it, but I'm primarily interested in your views! ?

tessa

@tessa

Not on Lemtrada.....I apparently have spms which was diagnosed last year.....however I have also had over 40 years since initial diagnosis when I was 16 of completely no symptoms or relapses at all. So this is a totally unpredictable disease and I am not surprised that neurologists struggle to understand it,

MaryJane

@MaryJane

Hi Susan, I am in the same situation as you. Gileyna has dropped my WBC and platelets very low so they suggested I try Lemtrada. Unlike you, I've had MS for 22 years, mostly mild symptoms and quite a few years since my last new lesion. Reading the posts on here and a few blogs online have been informative but I'm still weighing the pros and cons. I understand the hope Lemtrada gives people but the side effects scare me. My body does not like anything put into it that doesn't belong. Good luck to you!

Monica2015

@Monica2015

Hi @orlando27, sorry to hear re the weakness. Do you mean lack of strength in your limbs and issues with walking? I feel as if I've give backwards somewhat, which is probably something I should mention on another thread as do not wish to dissuade those considering Lemtrada, as the reasons therefor are largely self inflicted and additionally due to my walker breaking down after a 30 minute difficult rehab session. Stupidly, I had deliberately parked the car some distance away to walk as much as possible, knowing I could rest with the seat on the trendy walker, at the top of an incline and was forced to push the damn contraption bent over when I was overly fatigued in any event and already had back issues! This has exacerbated my existing knee and back issues and resulted in a drop foot I rarely experience...so was wondering if you had ever experienced that and what possibly might help it? This has exacerbated the burning in my legs too. I was attempting to reduce all my meds significantly before this debacle! How is the walking, and how did the nerve pain abate? ?

Susanmayer81

@Susanmayer81

@maryjane pretty much as me! Platelets have always been ok but unfortunately my WBC got critically low in the last 6 months and I've always been 'active' regardless Gylenia (I mean the drug was good at 'estinguish the flames less good at preventing the fire from starting. Jeez i'm sorry not a native English speaker hope you'd understand me anyway ?). I'm aware that Lemtrada could be the best option for me but it's an extremely tough call. Reading what @orlando27 writes though, I'm kinda relieved : I've always been obsessed with PML and thyroids issues. Hope not to be in the unlucky third. Good luck everyone! Now that I've discovered this forum I'll stick around as much as I can!

MaryJane

@MaryJane

@Orlando27, my nurse practioner put me on every other day and my WBC and platelets are at the lowest they've been. She has now told me to take it for a week and take a week off for a month and will test my blood again. I've been on Avonex, Copaxone, Tysabri and Gilenya. I'm JVC positive so they have to be careful what they give me. I have been very lucky with my MS, so far but have noticed some changes in the past few months. I don't know if it is because I've been working long hours and my body is telling me to sleep or my MS is rearing it's ugly head, once again. I believe Avonex messed my thyroid up and thankfully I have a good doctor that caught the pre cancer cells before they became cancer. Which I blame on one of the DMDs above.

MaryJane

@MaryJane

Forgot, I also tried Aubagio.

MaryJane

@MaryJane

@orlando27 I was on the Tysabri trial. The trial finished and I was asked to do the extension trial. I did that for 3 or 4 months and then they stopped it because of PML. That is how I found out I was JVC positive. After they pulled me off the trial, I found out I was on the placebo until the 3/4 months of the extension. I thought I had wasted my time but then realized I may have gotten PML.

Monica2015

@Monica2015

Susanmayer, 4 out of 4 of my messages failed to deliver, so disillusioned, I will reattempt tomorrow! No, Orlando, I didn't save as was rushing to complete before leaving the house...my fault!

Stumbler

@Stumbler

@Monica2015, you shouldn't have problems sending Personal Messages to @Susanmayer81, if there's a recipient, subject and content. And, you're both friends. There was a major network problem the other night, which may have caused a problem. :wink:

Susanmayer81

@Susanmayer81

Sorry @Stumbler didn't think that opening a topic may have caused a major problem. Apologies...You know, I just thought that as long as there's a forum then opening a new thread wouldn't have bother. Think I was wrong. Bye and good luck

Stumbler

@Stumbler

@susanmayer81 , you've done nothing wrong. Opening new threads is what this forum is all about. I was just trying to help out Monica2015, who was having problems with Personal messages. Please carry on with what you're doing :)

chloeautumnx

@chloeautumnx

Hi. I'm like @monica2015 and @orlando27. I have Rapidly Evolving Severe RRMS and had my first Lemtrada infusion last year- my second is to occur in June this year. At the moment there seems to be no new lesions but my existing lesions keep flaring up and my mobility is deteriorating. However, I was much like you that Lemtrada was the only option for me and I am glad I had it. I have been told that because of the nerve damage I accumulated so quickly before the Lemtrada which was so damaging, I will probably be left with that. So my advice is to get on it as soon as possible. The infusion was fine for me. I was an impatient and developed the rash on day 3. They prescribed antihistamine cream and tablets as it can be itchy. They sent me home with a variety of pills to take. I don't regret having it even after knowing all of the potentially dangerous side effects. They are so rare though and left with what I was facing (being in a wheelchair permanently), it was the better option for me. I look forward to my next infusion. X

Monica2015

@Monica2015

Thanks @stumbler. I was attempting to reply on this thread, not a PM, and even reattempted first thing yesterday morning, fully assuming the message has been sent only to notice it was absent. Anyway, not a big deal, and I will redraft. @susanmayer81, there is no need to withdraw, otherwise I am unable to going to the effort of redrafting to share my nuggets of wisdom ? with you! Pls confirm you are still present??

Monica2015

@Monica2015

@orlando27, I completely understand, it's a constantly evolving and changing balancing act! Have you attempted neurophysio to regain some strength at all? They focus on core strength as you may be aware, which is necessary to regain any kind of real function. @chloeautumnx, have you thought about changing your diet so as to not place so much pressure on your digestive system which is at miminum 70%+ of your immune system? This might be the cause of the numerous flare ups, if you are consuming foods to which you are intolerant. It certainly is a serious contender in approx 80% of my exacerbations.

Susanmayer81

@Susanmayer81

No worries @monica2015...I'm still around ?

Monica2015

@Monica2015

@orlando27, credibly appears so! Good luck with your exercise plan, I hope you manage to rebuild your strength. May I ask whether you consider the pregablin you take in the morning or the evening to be the most important re spasm/pain control versus general muscle weakness. I've been hoping to attempt once again to eliminate one of the doses. Thank you in advance. M @susanmayer81, welcome back!

iain72

@iain72

I completed both courses of lamtrada first 5 dayscores of the infusions in December 14 I had to stay in hospital as was first patient they had given it to 5 days went fine. Worst thing was sticking to the diet for the 3 months after the treatment as this covered the Xmas period. Mri scan before second course of infusions showed no new lesions and no active ones. The next set of 3 infusions I had in December 15 but this time as an outpatient which was much better. Had a reaction to first infusion but nothing major temp spiked blood pressure spiked and heart rate spiked but came down after an hour or so felt fine all the time. Next 2 days were fine right up in till I was about to leave when my ms nurse came and said I had developed an underactive thyroid knew it was one of possible side effects but just means 2 more extra pills to take. Just had latest mri and still no new lesions and no active ones so it’s doing its job. Haven’t seen any improvement but haven’t got any worse which is what I was looking for was diagnosed April 1st 2014 not a joke but nero consultant and ms nurse amazed I had not presented before due to number of lesions on brain and spine I lost use of legs quite literally over night. Ms team thought lamtrada best option so I went with it and no regrets. My brother also has ms but is treated at another hospital and is on tysabri so we have digs at each other as to who's having best treatment. Hope this helps.

Susanmayer81

@Susanmayer81

Hi there! Just a quick update....Yesterday I talked to my Neuro and finally took my decision. I said yes to Lemtrada. I'm gonna end with Gilenya by the end of April, then after a 42 days washout, I'll start with the infusions. My doctor told me that's mandatory for me to start with the new therapy. That said, I'm still a bit confused and, yes, a bit scared about possible SE. Such as thyroid issues. I know I might sound boring but I'm reading a lot about that. I mean, my TSH-T3-T4 have been ok so far..but I don't know, I'm afraid. Has anyone of you ever experienced problems? How to manage with that? Thank you

Susanmayer81

@Susanmayer81

Hi, it's me again! How's everyone doing? I'm ok, fighting with bad fatigue ... Actually I'm gonna go mental unless I find a way not to be so lazy :) Btw, I'm counting the days to have Lemtrada done. But then again, while indulging in this above mentioned f*****g fatigue mood I'm also spending a huge amount of my free time - yeah I know...I could take long walks, go to the gym or whatever - overthinking any tiny little detail of what I'm about to go through in two months. That said, I'd like to ask anyone who's already undergone the treatment two basic questions. I'm aware that during the five days of infusion my immune system will sorta be destroyed (Am I wrong?) and from that point Lemtrada will slowly start working. I was just wondering: as an immunodeficient patient, protective isolation will be needed? And if so, how long for? Will that mean that neither my parents nor my boyfriend and friends could come visit me during the days of the infusions (assuming and hoping I will be an outpatient?). As usual, I apologize for being so boring but I'm sure here I could find an answer. Thank you very much. Hope to hear from you.

Susanmayer81

@Susanmayer81

Sorry forgot to mention @iain72 and @orlando27 :9

Susanmayer81

@Susanmayer81

Sorry forgot to mention @iain72 and @orlando27 :)

iain72

@iain72

Had both 5 day infusion and 3 day infusion so my lamtrada is done did not have to avoid anyone after both infusions you get a 30 day course of anti viral meds to help fight of any virus while your immune system reboots. Worst part was 3 months diet to stick to my treatment was just before Christmas so had to miss out on my cold turkey sandwiches twice. But it's worth it 4 months on from final infusions and mri shows no new lesions and no active lesions so well worth it. Hope it all goes well. Just a point I now have a underactive thyroid to go with my ms now but just more pills to pop.

TracyD

@TracyD

@susanmayer8 Apologies for not seeing this sooner. In my defence I've had a busy weekend and not been online much but I can do that these days thanks to Lemtrada :-) I'm now 11 months and 1 week post round 1 of Lemtrada and looking forward to round 2 which should be May 18th. I had Lemtrada as my first and only treatment after diagnosis. It's been life changing, everything is 'normal' now and as a first line of defence I would recommend anyone who can get it grabs it with both hands. My entire journey so far is documented in detail here : http://tracyslemtradajourney.blogspot.co.uk/ It's not just Lemtrada, it's my life with it, a long read, and not quite Bridgit Jones or The Secret Diary of Adrian Mole, and it's certainly not Shakespeare :-) - hope it helps If you need someone to talk to please drop me a PM, I'm happy to share contact information xxx xx

Susanmayer81

@Susanmayer81

Thank you guys!!! And @tracyd wow!!! You're kinda a rockstar to me....:) I've been reading your blog over and over again for the last 5 weeks. Awesome! I was trying to find a way to reach you and look....you've found me! Thanks :)

TracyD

@TracyD

@Susanmayer81 LOL at rockstar if you saw me playing singstar you'd be stuffing vol au vents in your ears and trying to call a taxi :-) Always happy to share my mobile number for UK MS'ers or Skype / FaceTime for elsewhere people. xxx

Susanmayer81

@Susanmayer81

Ahahahah!!! Anyway thanks!! Just an email contact would be fine :) ... I've read your pre Lem condition and how much you benefited from the 5 day infusion. Of course my starting point and symptoms were different. You went straight to Lemtrada, I had Gilenya in between. And it didn't prevent me from developing new active lesions and nothing could do for my back and shoulder pain. One might laugh at it, but I really feel terrible. I'm making my best not to show that at work (none knows there) but other than working, when I'm back home, I'm so soring all over and I feel like I don't wanna do nothing but sleep. And this pisses me off 'cause I have (and want) to do tons of things. Sorry for going so personal and so emotional, but I've a question for you @tracyd. Have you ever experienced back, shoulder and neck pain before Lemtrada? And if so, has something changed in the last year? It would be a beacon of hope for me! Have a good one! Thanks S.

TracyD

@TracyD

@susanmayer81 I've had shoulder, back and neck pain for many years and mostly attribute that to a woman who smashed into the back of my stationary car at a set of traffic lights on June 6th 1995 (not that I'm bitter or anything and the date any burnt into my brain) My neck and shoulder pain have been fixed by my Physio but the lower back, especially when I overdo it walking does make itself known with a vengeance I'm working on my core strength with some Pilates excercises to see if it will make things better I will let you know how that goes I've sent a friend request if you accept it I will send you my email xx

Pamisue21

@Pamisue21

Hi Susan Wondering how you are doing and if you made any decisions I was one of the patients that participated in Phase III of the clinical trial for Lemtrada. If you have any questions you may message me. If I had a choice to to Lemtrada again, even with any setbacks, I would. It's changed my life.