@shopaholic84

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shopaholic84

Lemtrada - The ONLY drug worth taking?

I'm new to the site and MS. I was recently was diagnosed and am not currently taking any dmd through my choice. I am leading a pretty healthy lifestyle and have not had a relapse since my first in January which was light sensory loss in legs. My recent mri showed a signal change since January . I feel I will take the step and start dmds in the new year but am a little cautious as Lemtrada seems to be the only drug that seems to halt the disease through feedback on here. This drug had not been discussed at a recent drug seminar I attended. Is there any point in me accepting the other first line drugs offered?

Stumbler

@Stumbler

@shopaholic84 , in the UK, the medical profession seem to have a very conservative approach. They seem to prefer a gently, gently approach and, when that doesn't work and we deteriorate further, they'll use a stronger, more efficacious treatment, I don't know whether it's down to prudence or economy. Anyway, Lemtrada does appear to be the best treatment available at the moment. It's given conveniently over five consecutive days, then nothing for a year. It's been called, "the nearest thing to a cure, without calling it a cure" Have a look at this site to help you decide, https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions .

Roz17

@Roz17

I also am new to this site. I have had secondary progressive MS for about the last 15 years. I'm not on any drugs at all as I had so many side effects that I ended up taking more drugs to suppress the side effects than for my symptoms. I can manage to walk a very short distance with crutches but use a wheelchair mainly, and my balance is practically non-existent. I can't lift my right leg to walk and my right arm is very weak but now my left leg keeps folding up. I don't see a MS nurse yearly unless I request it as she is ultra busy with relapsing MS patients who are on DMDs. I have so many other symptoms as well - am just wondering if it's worth me asking if there is any thing I could be offered to try and slow this recent rapid progression? It is years since I have seen a consultant. Hope you manage to get suitable drugs in the New Year, Shopaholic84.

Stumbler

@Stumbler

Hi @roz17 , I too have Secondary Progressive MS (SPMS). I call it one of the cheap versions of MS, as there are no expensive Disease Modifying Treatments (DMTs) available to us presently. The only thing we can do is ask for drugs to address some of the general MS symptoms that bug us. Apart from that, we have to try and keep ourselves as well as we can. I use swimming, Pilates, Yoga and HBOT in this respect. But, even that is problematic after a recent deterioration. It can't be a relapse, as we're SPMS, so don't get relapses, do we??????? There are some things "in the pipeline" that may benefit us SPMSers, and the Primary Progressive MSers (PPMS), like ocrelizumab. Although, personally, I question the diagnosis of SPMS. It seems a bit subjective to me.

TracyD

@TracyD

This is my personal opinion so I'll caveat that first, and as the others will tell you - I'm not terribly 'tactile' with people - okay I'm as subtle as a bull in a china shop - I'll apolgise first :-) I will be 7 months post my first Lemtrada treatment next Friday and almost all my MS symptoms have remitted, I'm relapse free and life is 'Normal' again. My Neurologist was all for the softly softly approach to slow MS down, me - I didn't want it slowed, I wanted MS on the floor critically wounded unable to get up and if it tried well I'd kick MS in the balls again and watch him curl up in a ball on the floor again. MS is a critical illness - your life and critical illness policy will pay out when you're diagnosed - just like it would with cancers or heart attacks - because unchecked the effect MS can have on your life is catastrophic. Don't underestimate the sneaky damage this disease is causing to your central nervous system even when you're not in the clutches of a relapse. So my opinion - NO, there's no point in having something that's not as effective, not as safe and does not offer hope of improvement in the way Lemtrada does. You make the choice now while you're MS is young and the damage not too severe, fight back, hit it hard, hit it fast and beat the shit out of it - show it who's in charge of your immune system and your body :)

TracyD

@TracyD

@Stumbler I thought HSCT was available for SPMS ? or am I mistaken ?

Stumbler

@Stumbler

@tracyd , if any stem cell treatment is available for SPMS then my team (if I can call them that!) are being incredible quiet. But, here is the MS Trust's take on the present situation :- https://www.mstrust.org.uk/a-z/stem-cell-therapy#availability

TracyD

@TracyD

hmm .... that's interesting as the guy who I do the HBOT with is progressive and he's had HSTC on the NHS ..... will ask him again on Saturday for you xx

Stumbler

@Stumbler

Cheers, @tracyd

shopaholic84

@shopaholic84

Thank you for all your comments. At the moment I'm stuck between wanting another baby and completing my family or starting my meds and potentially forgetting about it. I don't remember tecfidira or tysabri mentioned at the drug seminar either. I suppose money is the reason why they don't put you straight on to Lemtrada.

Roz17

@Roz17

Hi Stumbler, can I ask why you query a diagnosis of SPMS? I can see a definite difference in my disease now. In the beginning I had various relapses every year which usually took about 12weeks to finish, where as now I feel like I'm on an icy slope crashing down hill with no improvement, just getting worse year on year. A bit worrying really when I stop to think about it - something I don't bother doing very often ?

Roz17

@Roz17

Shopaholic84, I hope things go well for you and you get all the information needed to help you make your decision. Good luck.

hollylb10

@hollylb10

I am on Tecfidera, a first line treatment. I had a bumpy start but now I have been on it for a month and have had no MS symptoms other than the usual tiredness and aching in the evening. So all going well for me. I would definitely recommend it as an option. As your MS appears to be mild then if your consultants are anything like mine they won't offer you Lem anyway :/ Tecfidera is also very safe, although it does have some side affects I am lucky to say that I have settled into it well. Good Luck x

shopaholic84

@shopaholic84

Thank you @roz17 and @hollylb10. I think I'm going to have to sit with my drug manual in the New Year And weigh up the pros and cons. I really don't like the thought of injecting regularly:/ and am hoping for the least side affects considering I fine. X

lhroxy

@lhroxy

My 29 yr old daughter has been diagnosed today and will see the specialist MS consultant in January when treatment will be discussed. She is is shock and devastated at the diagnosis. I feel I need to do the investigations on her behalf regarding medication questions to ask the consultant. I obviously want her to have the best chance of a normal life and at the moment she fears she will not be able to. Lemtrada seems to be the most talked about drug on this site. Is it given in the first instance or are other things tried first. I fear I may come over as an over involved mum but I am so worried about her. She is afraid she will have to give up her job (BA cabin crew). She lives alone in a shared house near Heathrow but I live in Manchester so cannot be on hand to help her (not that she would want me to!) Any help would be very gratefully received

Stumbler

@Stumbler

@lhroxy , your daughter will be in shock at present as she considers what this diagnosis means to her. MS is no longer the taboo subject that it used to be, it's now a manageable condition. Your daughter just needs some time and space now so that she can try and understand this. You could try and point her the MS Trust's website, where they have some good literature for the newly diagnosed, https://support.mstrust.org.uk/shop . tell her to avoid "Dr Google" and stick to creditable websites, e.g. the MS Trust or the MS Society.

hollylb10

@hollylb10

I think it is great that you are researching into your daughters MS. Both my parents were very helpful when I was first diagnosed also aged 29. My husband is working lots and is not always here when I need him so they have been my absolute rock. Just encourage her with all the positive stories and developments in the treatment of MS. There are plenty out there, and also lots of lifestyle changes that can be made. I am very much into my 'MS diet' and vitamins and supplements. I am a mother of two, living a 'normal' life, MS has not been as bad as I imagined so I feel very lucky at the moment. Lemtrada is a very good drug and there are a few people on here who have had real success with this drug. However, this is not always a first choice drug for all MSers and some consultants won't offer it unless the disease appears to be aggressive. I am happy on my treatment at the moment, Lemtrada is something I may consider in the future. All you can do is be there, support and offer comfort. She will find her way of dealing with it. My first few weeks with a nasty relapse were the darkest days I have ever had, I never thought it would end. But here I am happy and healthy and kicking the butt of MS :) Boxing Day will be a year to the day that I had my first and only debilitating symptom! X

Margarita

@Margarita

I started out trying to be tactful about this, but I think I'm going to start partying in the china shop with @tracyd. @lhroxy Your daughter is lucky, as strange as that may sound - she's lucky to have a diagnosis and to have it now, in 2015, when things are looking so much better than even a few years ago. Most of all, she's lucky that you're here! Oh how I wish that someone in my family (or even some of the medical professionals I spoke to!) had been able to give me the gift of information in those early days. The absolute best thing both of you can do for her future is get informed. Shift is a great place to start. There's nothing like doing the homework and forming your own opinion, but here's mine. I researched up down and sideways - I didn't want to, it was scary, but learning the truth about MS was an important part of the process. There's a lot of softly softly don't scare the monkey, um, patient that goes on. A lot of wait and see and hope...I want to punch every person who was prepared to let me make life changing decisions based on that absolute nonsense. You have to know the beast to beat it. Some of us might win the "mild" MS lottery (even that might not be forever), but for most of us this brain-eating sucker is only going to get bigger and uglier as the years go by. Them's the statistics. The good news is that your daughter has options. There's the very old option of living it up while she can - okay, so living it up in general is always a good plan! - and accepting the limitations that are to come. There's the old option of drip-feeding the beastie poison until it becomes immune and wins anyway. Or there's the new approach - backed by The Science - of early, aggressive treatment. AKA kill the beast. Or at least take your absolute best shot at it. I'm yet to hear a good enough reason not to. Forget about how she's doing right now, this isn't about treating current symptoms, this is about stopping this thing in its tracks...BEFORE it gains too much strength/momentum. Lemtrada is the only thing we have at the moment that can do so. It works best when taken early on and in those who are treatment naive. That means waiting-and-seeing or trying weaker drugs first is detrimental. And nonsensical if Lemtrada is going to be the drug that's escalated to in the end. As for it being on offer - don't wait for anyone to offer anything, know what you're entitled to and make the necessary fuss to get it. This whole process has been hugely eye-opening for me in that regard. Your daughter is going to have to advocate for herself, only...wait, you're here so she's double-lucky, she has you and a whole bunch of supporters already! I'm somewhat (vaguely!) older than your daughter and, in the past year, have gone from fear of what's wrong with me; to diagnosis and denial about what that really meant; to finding out more about MS and assuming my whole life was going to be derailed sooner or later and planning accordingly; to taking control of my treatment and learning that, actually, the outlook ain't so bad at all. My career plans are now back on, as are my plans for a family in the next few years. Who'da thought it? Information is your friend. This forum is full of friends. And you are an awesome mother.

lhroxy

@lhroxy

Margarita, what a breath of fresh air! I just love your views and agree wholeheartedly. The only problem at present is that my daughter won't listen to anything I have to say. She is not ready to do the homework necessary before she is transferred to the specialist neurologist in January and wants to deal with everything herself. She would not let me go to the hospital with her although her father insisted on going and was able to listen to what the consultant had to say and he has kept me updated. She had a lumbar puncture this afternoon and is due to start the first of three sessions of steroids tomorrow which should restore her sight and mobility and she is coming home (Manchester) from London on Boxing Day but she has already warned me not to talk about it! I hope this obstinacy will abate before she goes back to hospital but I don't won't hold my breath! In the mean time I am beside myself with worry.

shopaholic84

@shopaholic84

@lhroxy it's great you are researching for your daughter and giving her the support she needs. This is a great site with lots of helpful people. @hollylb10 I am a mum of 2 also and January will be my year since relapse. Wishing you all a healthy and Happy Christmas.

Margarita

@Margarita

@lhroxy It's a difficult situation to be in, that's for sure. It might be one of those give-it-time things, or you might need to find the right way to open the dialogue with her, or find the resources that she would feel most comfortable with. I know that, in the beginning, I was hugely (and unfairly) frustrated with some of my nearest and dearest for a whole host of things - treating me like I was dying, going on about accessibility and disability allowances that were of no relevance to me, telling me about things like vitamin D like I hadn't done even the most basic research, or a friend who had been miraculously cured with some diet or deep breathing or whatever...I quickly learned to tune all of that out. I got a flyer for Shift from my MS nurse and my homework started with a youtube video I found here...would I be here if my mother had handed me the flyer though? Hmm. That's the problem right there! She would have said "here, this website cures MS, look it says so" and I would have rolled my eyes. She would have sulked. I would have felt guilty and gotten myself outta there. So what could she have said that might have overcome my resistance? My best shot would be: "I know I'm not the one going through this, you're a grown up, you're capable, and my job as your mother is to support you and your decisions. I want to to do that to the best of my ability, so I've been trying to learn what I can, trying to better understand what you're dealing with. I've come across some information I truly believe might be important and of some real benefit to you - I wouldn't bother you with it otherwise. Can I pass on the link to the website/video/booklet/email address and ask you to give it a look/some thought?" Not remotely realistic, I know! Again, I applaud you for trying though. Patience is probably going to be key.

lhroxy

@lhroxy

Thankyou Margarita for your story and your advice. After reading about your experience I think I will send her a message along the lines you suggest and hope she will respond positively.

Peanut

@Peanut

@lhroxy My mom and I both have MS. When I was diagnosed last year in October I pulled away from my entire family, especially my mother. I know my mom blames herself for my MS (which is not true). However, the constant worry and checking up on me drove me to the edge. I was not in a place to worry about everything in my life and worry about what my family was going through too. Even though I knew their intentions were good I needed my own time to process first. That may sound selfish but I have no doubt what an excellent mother you are. But maybe your daughter needs time to sort through things and as suggested by @margarita just let her know you are there for her and support her.

lhroxy

@lhroxy

Thankyou for this peanut. The hardest part of this for the family is the utter helplessness. Your mum must be feeling even worse if she is also feeling guilty. My daughter has told us that she intends to carry on with her life as normal and not tell any of her friends as she does not want them to treat her any differently. How are you dealing with it? Are you taking any of the disease modifying drugs? Have you been able to carry on your life as usual? Sorry too bombard you with questions but I really would appreciate some help in understanding this from someone who is going through this. Thankyou. x

Peanut

@Peanut

@lhroxy You are not bombarding me with questions. I currently am on Tysabri. That is what I started on and I have not been on any other DMD. I am in the process of moving to Lemtrada as I feel this is my best chance of maintaining my baseline cognitive function and minimizing brain atrophy. Keep in mind my mom has had MS for over 20 years, is not on any DMD currently and just retired 2 years ago. That is how different this disease course is for any 2 people. And yes my mom carries much guilt on her heart. I kept my diagnosis for 4 weeks from my family because I knew my mother would blame herself, and she has. I've told her she is not responsible for this. I don't blame anyone. My life has not been "normal " since I was diagnosed. I too do not want to be treated differently. But the truth is I am not the same person that I was. Even a year later I'm still trying to figure it out. It's a struggle to know that some days I don't know quite where I fit in. But really in life there are always going to be people that have no concept of how their actions effect others. In those times I'm learning that I can only control my own actions and thoughts . You have to pick your battles. For your daughter just listen to her, really listen to what she is telling you. Look for the meaning behind the words. I realize how helpless my family felt and probably still feels at times. But this is really about your daughter not you. I'm not saying that to be mean or rude. I truly believe your daughter knows you love her and want to help, but she also knows she can't shoulder the responsibility of healing herself physically and mentally as well as easing your pain. That weight needs lifted and if she is crying or sad just let her know you're there if she needs you. If she's angry let her scream and tell her the same thing. She needs to work through this and she will, and you will be there right along with her. Because us girls really need our mothers and she knows this, but the initial shock, embarrassment, and fear is a lot to get through. Take care ?

yassyg

@yassyg

@lhroxy sorry to hear of your daughters recent diagnoses. I promise it will get easier. I was diagnosed in September 2015 at the age of 26 and I'm now coming to terms with it. I have a great consultant and support from the MS team at Charing Cross hospital in London. My consultant recommended Techfidera to me and I am now part of a study which enables me to have more MRI scans and testing then the NHS gives. I have been on Tech for 6 weeks now and have experienced few side affects and am feeling better in myself. I know my parents have been worried about me especially as they live 80 miles away. If your daughter would like somebody to speak to I would happily talk to her. Inbox me and I will give you my number. Thanks yasmin

lhroxy

@lhroxy

Yassyg Thankyou so much for writing to me. I have sent you a friend request as I would love to put my daughter in touch with you. She lives in West Drayton so not too far away from you. We are due to see the consultant to discuss treatment options on 18th January and techfidera is one of the two drugs that seem to be the best currently available. I am not very computer literate so don't know how to send you a private message although I will carry on trying! Please stay in touch, Thankyou, lhroxy

Fi1909

@Fi1909

Hi lhroxy. Having only recently been diagnosed i understand the emotional roller coaster that your daughter is on . I still haven't told all my friends and work colleagues as their reactions can make me feel like I am at the start of the journey again. She will come through it, if like me it was unexpected she just needs a little time to get her head round it. I am having a lumbar puncture next week as the final confirmation and Lemtrada once the results are in. For me Lemtrada is all about hitting it hard and early and hopefully in a way that will allow me to lead as normal a life as possible. Please let your daughter know she can message me.