susanmayer81 30/03/16
Last reply 1 year ago
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.

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amybeets05
1 year ago

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


pv04
1 year ago

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


Anonymous
1 year ago

@susanmayer8 I am a worse case Lemtrada patient, and while 7 months in, I am told not to expect much until the second round in August, so the jury is out. I would however suggest that you ask @tracyd about her experience which is much closer to your’s. Good luck!


monica2015
1 year ago

@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!


Anonymous
1 year ago

Hi @monica2015 ! How are you? My fatigue and pain hasve morphed into weakness. I started taking nortriptyline prior to address the pain. It seems to have reshuffled the deck. πŸ™‚ No pain, but no strength! I hope it passes. Seems like I am always saying that! πŸ™‚


susanmayer81
1 year ago

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
1 year ago

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


tessa
1 year ago

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


susanmayer81
1 year ago

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


Anonymous
1 year ago

We are farther away from DX which is not ideal for Lemtrada. Benefits may not occur until both rounds are received if ever. IThe second round consists of 3 infusions received 12 months after the first. I have a friend from the clinical trial that was wheelchair bound and was walking 4 miles per day by year 3. She said that I could not expect to see improvements early because I received Lemtrada 10 years after DX and had sustained significant nerve damage. Lemtrada was my best bet to stop a rapidly progressing disease. Lemtrada targets and wipes out specific parts of the immune system in relapsing patients with the belief that when the immune system reconstitutes, it will not “remember” MS. The therapy has been tested for over 25 years and has proven to halt and possibly reverse MS progression in most of the clinical trial participants. The effect lasted during the entire 5 year trial for most participants. The belief is that it may last for many years for most patients. You have nothing to worry about during the infusions. It was a snap and the only SE I have heard about and experienced was a mild rash which was easily resolved with an antihistamine. I talked to others that said the same about participants in the clinical trial. I was told by a participant that was also a nurse that they never heard of anyone else having a serious infusion reaction. I think the best advice is to be properly hydrated before the infusions. I drove myself to each of the infusions and never did anything special. Your doctor will have your skin checked to make sure that there are no skin lesions or cancers prior to the treatment. You will also be given a prescription for an antiviral and will ask if you have ever had shingles. They may advise you to get a shingles vaccination because your immune system will be compromised for several weeks after your infusions. Depending on your location, the infusions are given on an out patient basis or possibly on an inpatient basis (U.K. mostly) Problems after infusion include a possible fungal infection the first 30 days while your immune system is reconstituting. Major SEs include thyroid anomalies, ITP,and Good Pastures’s disease of the kidneys. Thyroid disease may affect almost one third of patients and is easily detected and treated using commonly prescribed daily pills. The other problems are easily detected and treated and only affects a very small percentage of patients. Lemtrada SEs are tested for 4 years after the last infusions with monthly blood tests paid for by Genzyme, the drug manufacturer.


tessa
1 year ago

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,


Anonymous
1 year ago

BTW, The net of my last post is you may end up needing a thyroid pill each day if you are in the third of unlucky patients vs. a lifetime of runaway MS. The disease can get really ugly. My case is marked by severe nerve pain which half of all MSers experience. Mine got so severe that it was intolerable. Lemtrada has stopped the runaway train for the first time for me. The jury is out how many physical improvements I receive. The autoimmune SEs are being researched and there is currently a clinical trial using already approved medication to reduce the chance of SE and may be possible to take post Lemtrada since the SEs may not occur for several years.


maryjane
1 year ago

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!


Anonymous
1 year ago

PS I forgot to mention something very important. Because Lemtrada targets specific proteins on the immune system for destruction before reconstituting beginning in week 4, there is NO EVIDENCE OF PML unlike every other highly efficacious DMD. They all require a continuous suppression of the immune system and have all been associated with PML. This is a significant distinction.


Anonymous
1 year ago

@maryjane I was on Gilenya for 4 years waiting for Lemtrada. I hoped to get in the clinical trial, but was too late, and then the FDA held it back a year here. My WBC dropped too, so went to every other day dosing. You might consider this. Lemtrada is a hard call if your MS has not been active. Any signs of progression?


Anonymous
1 year ago

This is much more recent and comprehensive by a young woman that has participated here at Shift.

http://lemtrada.blogspot.com


monica2015
1 year ago

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
1 year ago

@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!


Anonymous
1 year ago

I might add that the reason that the “young woman” I previously referenced rarely blogs here anymore is because she “got her life back” after her use of Lemtrada here in the U.S. and stopped writing about it (I will respect her privacy). But she was very proactive and went offshore from the U.S. during the period that the FDA refused to approve in the States. She went from a self described difficult MS condition to a much improved status after Lemtrada. See her description of the journey at:

http://lemtrada.blogspot.com


Anonymous
1 year ago

@ monica2015 I am always dealing with extremes! Now by adding an old RX of nortriptyline that I have tried a few times before to try to help with my pain, I have somehow greatly reduced my pain, but also leg strength. I have since reverted back to my baseline meds with the intent to restore the status quo. aaugh! πŸ™‚


maryjane
1 year ago

@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
1 year ago

Forgot, I also tried Aubagio.


Anonymous
1 year ago

@maryjane I am telling you from firsthand experience and from others I know that Gilenya cannot hold back aggressive MS particularly after previously using Tysabri. And now you are having the problem compounded by having to cut back on Gilenya. I would try to prevent new symptoms from occurring asap. The only option is to start Lemtrada. Don’t wait for new nerve damage. Talk to your neurologist.


maryjane
1 year ago

@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.


Anonymous
1 year ago

@maryjane The PML risk is still only about 1 in one thousand until you have been on it for five years when the risk goes up and most neurologists recommend changing DMDs. The problem is that you can suffer Tysabri withdrawal syndrome because other than Lemtrada, DMDs are weaker and a severe relapse can ocurr within the first 90 days post removal. This happened to me when Tysabri was first reintroduced. I used Tysabri for 1.5 years and came off waiting to start the Tecfidera (BG-12) Clinical Trial. I suffered the worst relapse ever after about two months. Now we think that Lemtrada effectively resets the immune system, so Tysabri withdrawal syndrome is prevented when switched to soon after Tysabri withdrawal.


monica2015
1 year ago

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
1 year ago

@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. πŸ˜‰


susanmayer81
1 year ago

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
1 year ago

@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 πŸ™‚


chloeautumnx
1 year ago

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
1 year ago

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
1 year ago

@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.


Anonymous
1 year ago

@monica2015 After 5 days withdrawing from the nortriptyline that I had added, the strength in my legs returned to normal. Unfortunately, the pain did as well. So, my theory that the nortriptyline affected both was confirmed. Scary several days though! πŸ™‚ I am using a new pedaling exercise device to build up my quads so I can return to walking. I hope I can achieve that goal soon. I will let you know!


susanmayer81
1 year ago

No worries @monica2015…I’m still around ?


monica2015
1 year ago

@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
1 year ago

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.


Anonymous
1 year ago

@monica2015 I take 150mg Lyrica every four hours and another 150mg as needed. Lyrica is best for nerve pain I have found. Less is best as it’s mode of action disrupts nerve signals which can affect walking. Baclofen is mainly used to combat spasticity. Here again, less is best as it can cause weakness of limbs. Some MSers prefer the stiffness associated with spasticity for walking rather than the “rubbery” legs caused by too much baclofen.


susanmayer81
1 year ago

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


Anonymous
1 year ago

Hi @susanmayer81 The prospect of SEs is scary only if compared to being healthy. I am living with a very aggressive case of MS that reminds me each day how awful MS is. Go to the MS Society’s website and and read how many symptoms there are. I decided that trading MS for a 30% chance at a common thyroid condition was a good deal! I think it should be required reading after each disclosure about possible Lemtrada SEs. There has never been a case of PML. You don’t have to keep taking medication after the 12 months of Lemtrada so you can get on with life, plan a family and forget about new DMTs and their SEs. If you take Lemtrada before permanent nerve damage occurs, you will essentially be cured! I can tell you as someone with a great deal of painful, disabling nerve damage that you should do everything possible to avoid it! I did not have Lemtrada during the early days of my MS, so I am trying to help others benefit from my experience. Don’t hesitate! All powerful DMDs have risks and rewards. Lemtrada is the first one to come along that can halt and even reverse the progression of MS as proven in the five year clinical trial. That is big news that most patients don’t even know about. You are one of the profoundly lucky ones that have a chance to derail MS!


susanmayer81
1 year ago

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 πŸ™‚ 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
1 year ago

Sorry forgot to mention @iain72 and @orlando27 :9


susanmayer81
1 year ago

Sorry forgot to mention @iain72 and @orlando27 πŸ™‚


iain72
1 year ago

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
1 year ago

@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 πŸ™‚
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 πŸ™‚ – 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
1 year ago

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
πŸ™‚


tracyd
1 year ago

@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 πŸ™‚
Always happy to share my mobile number for UK MS’ers or Skype / FaceTime for elsewhere people. xxx


susanmayer81
1 year ago

Ahahahah!!! Anyway thanks!! Just an email contact would be fine πŸ™‚ … 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
1 year ago

@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


Anonymous
1 year ago

Hi @susanmayer81

I had my first dose 11 months ago. Lemtrada kills off your T and B cells so not all your immune system. You wont need to go into isolation.

In respect of side effects I have developed a thyroid problem. It worries me little. As Orlando points out side effects are small fry compared to MS. Good luck with your treatment.


pamisue21
1 year ago

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.

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