@alexwilson

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alexwilson

Lemtrada as first treatment

Hello Fellow MSers!!! I was diagnosed with RRMS in May, and I saw my neurologist for the first time yesterday to talk about treatment options. She said that since my MS is active/highly active (pending a follow up MRI scan in a couple of weeks), she would recommend Tysabri or Lemtrada. I really don't like the sound of the side effects with the Tysabri, so am thinking of hitting this thing hard and fast with Lemtrada. However, as a first treatment I don't know whether it would be best to try one of the less aggressive treatments initially. Any tips or recommendations would be greatly appreciated! I just don't want to risk starting on a tablet/injection treatment only to find that it isn't very effective for me, and actually I would have been better off starting with the Lemtrada sooner. But equally I don't want to take a chunk of time off work and go for the really aggressive treatment if it would have been better to try another one first. Basically I'm just rubbish at making decisions and am hoping that somebody can make it for me!!! :-)

james32

@james32

Hi @alexwilson, I was also diagnosed in May after 2 relapses in 2 months and being highly active. I originally opted for tysabri but the risk of PML after testing positive for the JC virus was too much for me. For me hitting it hard is the best option as less chance of further damage being done rather than taking a less effective treatment. I'm due to to meet my neurologist and MS nurse this week to arrange pre testing and hopefully a provisional date. I'm sure you will make the right decision for you.

Elderflower88

@Elderflower88

Hi, I am in a similar situation and saw my neurologist today and was given the same two options. They seemed to be keener on lemtrada and I knew I wanted to hit it hard so I think it sounds like the best option for me. It is difficult to have the decision in your hands but also positive that we have some kind of control I guess! Sorry im not very helpful, just my initial thoughts. I hope it goes well whichever you choose. X

PV04

@PV04

I was diagnosed in Jan 15 - tried unsuccessfully to get onto a stem cell trial. Was given both options by Neuro in June 15. Opted for Lemtrada. First dose in Dec. Hard to know if it is working as felt fine when had treatment and feel same now. Happier myself knowing that I have hit it hard. Earlier you have it the quicker the recovery. Time and MRIs will tell if it makes a difference at all

Northernlights

@Northernlights

Hi Alex, Have you used the MS Trust MS Decisions? Great for helping you make decisions re the right treatment for you or at least prompting questions to ask your MS Nurses. https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid I decided I wanted Lemtrada when I was diagnosed last year having done a lot of reading because it I wanted to hit it hard and it was the right choice for me. I have just finished my second round of the treatment. I have found it brilliant and the treatment itself wasn't anywhere near as challenging as I had scared myself thinking it was going to be! (I understand everyone's experience is different). Both times I have taken six weeks off work (my work has been really understanding) but it has been well worth it for me, and I have been able to get back to normal for me, I was back jogging after 4 weeks. I know others haven't taken the full 6 weeks and have been OK too. The care throughout for me has been fantastic at my local hospital and others have said similar with their experiences. There are a couple of groups on Facebook for both treatments so they might also be able to give you an idea of what others have found on the different treatments. I hope my personal perspective helps. Good luck with your decision, I know it can be a daunting time when you are deciding. Lucy :)

Ashory

@Ashory

I was in that same situation as you. My neuro gave me all of the options crossed out all but three and said they weren't strong enough. Then said he was mainly only giving me the option of Gilenya for the sake of a third option which left me with Tysabri and Lemtrada. For me it was a no brainer and a few short weeks later I started Lemtrada. I took some time to decide between the two and did some further research but if I'm honest with myself I knew which treatment I wanted as soon as they were presented to me. I now know that in the terms of treatment I have done all I can to stop this disease and regardless of what happens later down the line I won't be saying what if I hadn't wasted time trying less effective and less scary treatments. The time leading up to actually having the treatment is much scarier then actually getting the treatment. Hard to believe but I think most of us that have been through it will say the same thing. I worked myself up over nothing for the weeks leading and despite a few minor complications it wasn't as horrible as I'd made myself think it would be. I was tired for the week of and two weeks after but I returned to work after that and getting into my usual routine helped me get back to normal. Only you will know what is going to be best for you. Good luck deciding!

alexwilson

@alexwilson

Thank you so much for all your really helpful comments. It's fantastic to know that other people have faced the same decision and have coped so well with and after the treatment. I think I am definitely leaning towards the Lemtrada, I am positive that my work will be understanding and @northernlights it's great to know that you were up and about again so soon after having the treatment. I'm aiming to start it in January so I have time to build my fitness and concentrate on my diet etc to put myself in the best possible position!

Cheryl118

@Cheryl118

Hi Lucy, @northernlights I am curious. What were your MS symptoms before you received Lemtrada, and how are you feeling now? Have you seen a lot of improvement? I received Lemtrada about 3 1/2 months ago and no change. Actually, I think that my symptoms are worse. How long did it take post Lemtrada before you say any sort of change?

TraceyP

@TraceyP

Hi @alexwilson, I am currently in the middle if my first round of Lemtrada (hence the fact I'm replying to this at 5am - damn steroids!) today will be day 3 for me and so far its really been ok. Like you I was leaning towards hitting it hard and fast - I have two small children and currently work 4 days a week and really wanted to continue to be as well as possible for as long as possible for all of us. I was offered Tecfidera as my alternative but the possidle brain infection side effect side effect scared me more than the risks of lemtrada so I went with that. I live in Cambridge and here at Addenbrookes they do the treatment as a day patient so I'm getting to come home each night to my own bed (finding it hard to sleep right now but that's my own fault for not having taken the sleeping pill they sent me home with to counteract the steroids) and so far the only problem I've had was my heart rate and temperature both went up a little on the first day, which is a common infusion reaction but I was well monitored throughout and they made sure it went back down before sending me home (that's why I'm resisting the sleeping pills though as one of their listed side effects was fast heart rate so didn't want to risk it upping it again yesterday it today!) but yesterday was all fine and I have felt perfectly well throughout so far, just very tired by the end of each day which isn't being helped by the waking up a lot, but as I have said - my own fault there!! please feel free to ask me anything you want to know about my treatment so far - the days at the hospital are pretty long and boring but im allowed laptop and phone so fully able to respond. there are also plenty of others on here with great experience (having had treatment much longer than me!) who I'm sure will be great help too. Hope all goes well with your decision making!

alexwilson

@alexwilson

@tracyp - I'm really pleased that on the whole you've had a good response to the treatment. Definitely keep us posted! I have another MRI scan pencilled in over the next couple of weeks and I'm seeing my MS nurse in mid-September, so all being well I'll be able to make my final decision then (although at this stage I think something would need to change drastically in my research to put me off Lemtrada). All being well I'm hoping to start on it in January, but I'm expecting to have quite a chunk of time out of the office (will work from home if I can) because no doubt in the winter months, infections and bugs will be even more rife on the tube!! Has anybody had a course of Lemtrada in the winter? Did the neurologist recommend having any vaccinations/vitamin boosts beforehand (other than the flu jab, which I'll have as soon as it is available)? I'm trying to dose up with as many defence mechanisms as I can! I'm also going to hit the healthy eating and exercise quite hard so that I am as healthy as possible when I start treatment. And today is day 2 of my drinking 3 litres of water...think this is going to take some getting used to! One last question...what changes has anyone had to make to their diet post-treatment? I've heard that gluten may be a no-no, and that soft cheese etc is a no-no for a few months after treatment, but are people generally finding this ok? xx

TracyD

@TracyD

@alexwilson I'm 3 months post round 2 of Lemtrada. I was diagnosed at the back end of 2014 and had round 1 in May 2015. First and only treatment for MS and unless I relapse again - well that's it. All the symptoms I had before Lemtrada are now gone and life is 'normal' again for me. With treatments like Lemtrada which are targeted to halt disease progression they are best used early as a 'first line of defence' rather than when it gets bad enough that it's 'the last resort' For me it worked like a dream and I would highly recommend it If you need someone to talk to drop me a PM, I'm happy to share contact details xx

TraceyP

@TraceyP

Hi @alexwilson, so far the diet advice is exactly the same as for pregnant women (no soft cheese, shellfish, sushi, rare or undercooked meat etc - which at least means I can now tell friends who moan about me wanting my steak well done when we eat out that its now medically mandated and not the crime against cuisine that they claim, sorry but I don't like rare meat!!) and the advice is to stick to that for 3 months after treatment but otherwise no special requirements. I asked my Neuro the other day if there were any other medicines (over the counter stuff that you may buy without seeing a doctor) that needed to be avoided but he said no, nothing like that so all sounds quite simple. Good luck with your decision. Xx

shopaholic84

@shopaholic84

Hello @alexwilson. I was diagnosed May 2015 after my first episode in Jan 2015. My symptoms are mild in comparison to others and I am yet to start a dmd but I'm hoping after speaking to my neurologist last week she is putting me forward for Lemtrada. Hopefully I shall find out in September. It's super difficult to make a decision but I feel if we are given the opportunity to have Lemtrada we should grab it with both hands. I am like @traceyp and have 2 children under the age of 6 and work part time. I need to stay up on my feet so am anxious about the downtime during Lemtrada. I start a new job in September in retail and was hoping to start mine in January as I feel booking time off will be frowned upon as December is the busiest period and they are unaware of my ms. I am also following a gluten, dairy and sugar free diet as recommended by my nutritional therapist. I will visit her again before treatment for advice on supplements for my immune system.

TraceyP

@TraceyP

Hi @shopaholic84 I have just finished day 3 of lemtrada and so far I have been advised to take the week after treatment off which I have done and then with the August bank holiday I am meant to go back for a four day week (I work in an office environment so not too physically demanding) then have the week after that booked off was holiday anyway as my youngest is starting school that week and is only in shorter days so its worked quite well for mw that I only really have to di four days out of four weeks but that is completely accidental in the way the dates work and I was only advised to take the week of and the week after treatment - I know some people on here (I'm pretty sure @tracyd is one) who even went back to work the week after their treatment. I am very happy to let you know how I find it when I go back anyway. Xx

shopaholic84

@shopaholic84

That would be great @traceyp. I'm keeping track of all the lemmie updates so I can prepare myself. I'm curious are you having your infusion at your local hospital or a hospital which has a MS clinic?? I think I'd rather stay in the hospital whilst I'm having it for the first few days just in case I have any reactions.

TraceyP

@TraceyP

Hi @shopaholic84 I'm having it at my local hospital (Addenbrookes in Cambridge) but as addenbrookes were involved in the creation and first trials of Lem they have their system down so well that they only do it as a day patient and send you home - I originally thought I would have preferred to stay in and be monitored overnight too but you don't get the choice here! That being said, on Monday when my heart rate was a bit high and I had a slight fever they talked about admitting me if it didn't go down (which it did anyway) so they wouldn't just send you home in a bad way or having a reaction, there are backups in place to admit if necessary. Whereabouts are you? Your MS nurse will be able to advise how your local hospital etc will do the treatment so you can factor that into your choices. Xx

shopaholic84

@shopaholic84

I'm based in south wiltshire but have all my appointments with the neurologist at Southampton General Hospital. I shall speak to my nurse and see what she says. Thanks @traceyp. Hope this week carries on smoothly for you and you are back to mummy duties by the time the kids go back to school ?

TracyD

@TracyD

@traceyp I worked from hospital during both round 1 and round 2, I worked from home for a week after round 1 before I went back but after round 2 I went back in on Monday. Fortunately I have a 'desk job' using a laptop so there's a lot of 'sitting on my arse' involved in working so it's not overly physically strenuous xxx

TraceyP

@TraceyP

Hi @tracyd how are you? I had thought it was you who told me you'd gone back almost straight after but couldn't remember if it was round 1 or 2. Day 4 is ticking along quite nicely for me so far. At the current pace I should hopefully be on the way home just after 3.30pm! Xx

TracyD

@TracyD

@traceyp I'm doing fantastically, been back in work continuously all the time since both treatments. All symptoms for MS are gone / quiet .... I still get tired but it doesn't stop me doing anything it's more like I have a 'lights out' afterwards ..... an example of this is yesterday .... It would appear that in the night on Tuesday I managed to smack my right hand on something - not enough to wake me - just enough to break a piece of bone off the knuckle bone of my right thumb - yup I broke my thumb in my sleep. It was the afternoon before it swelled enough to concern me and the pain was awful - like tooth ache but in my thumb - trip to the hospital, an x-ray later and I'm now sporting something that looks like the fight gloves that MMA fighters wear. Broken thumb. I sat down on the couch last night after dinner and in a lull in conversation with Gareth the lights went out - 18:58 and I was sparko on the couch - woke up at 23:00 .... went upstairs and slept in the bed until 07:00 this morning - according to my fitbit that's an epic 11 hours and 12 minutes of sleep. Being in pain for so long yesterday though was exhausting - I needed it. In work as normal today so it's all good :-) Good luck with day 4 you're on the downhill stretch now xxx

TraceyP

@TraceyP

Breaking your thumb in your sleep @tracyd - now that's impressive!! I'm one of the clumsiest people I know but even I've never managed this kind of thing!! ?

TracyD

@TracyD

@traceyp It's not the first time I've managed to break something in my sleep ..... I have previous 'form' ???

Northernlights

@Northernlights

Sorry for the delayed reply. My hospital (RVI - Newcastle Upon Tyne) at my first meeting after diagnosis I was offered Tysabri (as at the time they had more experience in this treatment having been involved in the trials) but I had gone prepared and asked for Lemtrada as I didn't want to wait to see what my MS decided to do, and the Nurses and Consultant were completely supportive of my decision, which was brilliant. I feel very lucky, as I had, had a different route to my diagnosis, as over the last few years I had random symptoms that I hadn't put down to MS at all. I had visited the doctor about them just in case but like many had been told they may be shingles, inner ears problems etc. In the end my diagnosis was a complete surprise. My Mum actually mentioned the possibility of MS to me when I lost the feeling in my leg and then developed triple vision in 2014, but I laughed it off as I merrily continued to train for our Great North Run. All of my symptoms were temporary (some hanging round longer than others), but when I developed other problems with my vision whilst walking in the Lakes, I rang my optician instead of the doctor and they sent me straight to Eye A&E, who sent me to Neurology and my diagnosis went from there. I have been lucky and remained active throughout, working full time, taking up pilates (to help with my core strength) whilst going through the initial tests and even persuading my boyfriend to come out running with me to tell me how high the curbs are when I couldn't tell, when I had my last main relapse (end of 2014)! I was told I had a heavy lesion load, so I didn't want to wait for any symptoms to get worse when choosing my treatment. The MS Team at the RVI are fantastic. I did have a proper emotional wobble after my first round of Lemtrada as everything had happened so fast (and I am so grateful for that speed and access to treatment). When chatting with my MS Nurse recently she did tell me they had seen a pattern with some patients who have gone through a similar experience as me. Being diagnosed and luckily being quickly offered one of the hardest hitting treatments, undergoing the treatment and then suddenly your out the otherside. It all happens so fast and when (luckily) you haven't had any really major health issues due to MS. Which really is the best thing about the experience but it can be difficult to get your head round at first. I hope this helps :)