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Lemtrada and injectables feedback please

I have recently been diagnosed with RRMS. My first relapse was in 2008, so about a seven year gap. My symptoms have primarily been sensory i.e. hypersensitivity in my legs and hands and MS hug, most of which have no died down a lot.

The consultant has advised it is quite mild but I’m now at the stage will need to look at the DMDs and wondered if anyone would be happy to share their thoughts on what has worked for them.

I do have the option of Lemtrada which I know is quite new so if anyone in particular has experience of this then I’d be really interested to know how it is gone for you.

Also with the injectables, how do people find the process of rotating injection sites and skin aggravation?

I’m going to find out more from the consultants next Tuesday but will be great to hear people’s thoughts on Lemtrada particularly but any of the others in terms of pros and cons for any of them.

I appreciate everybody’s experience is different which makes anything with MS very difficult but perhaps if you had sensory issues like me or if it’s been a long time since to your original relapse then maybe those same situations might provide some level of indication of how things might go for me.

Many thanks in advance

K

hi katherine

you didn’t mention the oral treatments, were they not on offer to you?

lemtrada sounds like an amazing drug. i asked about it back in 2008 but my neuro said it wasn’t available yet.

he was impressed that i could pronounce alemtuzumab though (its original name).

i went on copaxone and was fine for 4 years then i started to miss some injection sites because it gave me bad cramps.

as a result i overdid my arms and developed atrophy.

once my ms nurse saw them she said i was never to inject again.

i was too skinny for subcutaneous injections though.

now my skinny bits have become podgy bits because i have to eat before my tecfidera.

i switched to tecfidera and it’s brilliant.

good luck with whatever you choose.

carole x

Hi Katherine

i have started Tecfidera today, told MS nurse point blank no way was I stabbing myself with needles so no point suggesting an injectable drug for me…but it’s all personal choice and read up on here…great info and personal experience shared!

Good luck,

Roobs xx

Hi Carole

Thanks for your message.

I have oral options available too but have been put off by the potential of PML.

There seems quite a few people on various forums/groups I’ve looked at on Tecfidera so I might look more into that.

Thanks so much.

K :slight_smile:

Hi Roobs

Thanks for posting on here. It is certainly useful to get other peoples experiences to consider.

Tecfidera seems quite a popular choice so I will make sure I look more into this.

I hope it works well for you.

K :slight_smile:

Excellent post Katy. A fellow Shift MS member here :slight_smile:

I have no symptoms or disability but chose Lemtrada as the side effects of MS worry me much more.

Good luck Katherine what ever you decide.

Have you actually had a clear recommendation from your neuro? If you have, then hurrah for that, and my suggestion would be to go for his/her recommendation unless you have a better idea. The rest of my post assumes that you have had no such recommendation.

If you have not had a clear recommendation, you need to insist on more help than you have yet received from your medical advisors. You need the guidance of someone who understands MS in general and your MS in particular - in other words, you neurologist or MS nurse who has your recent scan in front of them and your notes and so on. It is no use them sending you away with a sheaf of leaflets and a suggestion that you choose one that looks nice and that some of us on here say have worked well for us as individuals. We aren’t you.

The drugs vary a lot in terms of efficacy and risk profile, as you no doubt know - and I mean a lot. Within the whole, some of them are much of a muchness. Others really aren’t. Civilians like you and me just do not have the expertise to make that sort of call without expert guidance. It is your neurologist’s/MS nurse’s job at least to narrow the field of DMTs that seem, in their judgement, to offer a fair balance between risks and benefits for you.

Alison

Hi Katherine

I was wondering what DMD you decided to go with?

I was diagnosed with RRMS last month and my consultant wrote a list of dmd’s for me to research and discuss what I would feel comfortable with at next appt.

I have a lumbar puncture on Wednesday which my neuro said he would be doing and then discuss treatment.

I originally first thought Lemtrada (he explained all risks but that it’s the strongest one) but upon first researching in depth I panicked, put it to the back of mind and thought Tecfidera.

However, now I think with me emotionally and mentally working through the rollercoaster of diagnosis I am steering towards Lemtrada again as we get one shot in life and I know I would think “what if” if I didn’t do it and fire the big one so to speak.

My first relapse was October 2015 with dizziness and one sided face droop. My second was a year later where I thought I had a trapped nerve in leg and loss of sensation when touching it. I do have niggling now and then from these relapses, dizzy feelings with eyes feeling like they are going cross eyed and tingling sensations in leg if I walk a while but they don’t stop me tending to my kids, work etc just more a hindrance.

My neuro had said my ms nurse would be in touch who I could discuss dmd’s with before appt, but I still haven’t heard anything.

I hope you are well and would be great to hear back in the path you took with dmd? Trying to get as much insight as possible before next week.

Lynette

Hi Everyone, I’m new here - so hello! I appreciate this thread is a few months old now but I was recently diagnosed with RRMS as well. It is also pretty mild compared to what I know others go through. However I am seriously considering Lemtrada as I want to try and throw it as far down the road as possible in the hope that I can keep it at bay for as long as poss. However the side effects are pretty potent and I wondered whether you guys above who were considering it went ahead with Lemtrada in the end and how you are doing now? Huge thank in advance - just great to chat to others going through the same. Bells

Hi Bells88

I am like you in that quite early on with this and want to give the biggest fight I can long term.

I decided to go with the Lemtrada and heard back 2 weeks ago it’s being funded, so ms nurse said I should get my dates shortly so shouldn’t be long now.

It is certainly a scary one when looking into it with the side effects but everyone is different and what they want which is why I think we get a varied choice at the beginning to find what one fits us best and our own reasons for going for it or not. Has your ms nurse sat with you going through all the DMD’s in depth that your neurologist has offered? That helps too.

I have spoken to a few people that have had it and it’s good to hear personal stories instead of just text book.

I felt so confused looking at them all but my head was (and still is) getting around the diagnosis but over time it became clear what I wanted to go for. It’s the not knowing what this disease holds or has in store that’s scary.

My lumbar puncture showed the oligoclonal bands consistent with ms and spine MRI a number of changes along with the 2nd MRI and so that also reaffirmed I wanted to go with the Lemtrada but like I said, everyone is different and I hope you too come to a choice you’re comfortable with.

Lynette

Hi Lynette09 Thank you so much for coming back to me and letting me know your experience and how you made your decision. I am so pleased to hear that it’s all been given the go ahead. I must admit neither the MS Nurse or consultant mentioned the possibility of Lemtrada not being ok’d so not something I had thought about! Is that normal practice? I’ve decided to get on the waiting list, MS vs side effects, the side effects seem preferable in the long term. Realising that has been hard but I guess it’s also part of getting your head round your diagnosis as well. I did see the MS nurse but I felt she literally went through the booklet so I didn’t feel I came out any further than when I went in, but as you say it’s all very personal so she can only tell you the facts. Still doesn’t make it any less confusing. I’m so sorry to hear your lumbar puncture showed changes and I really hope that the Lemtrada will help stop it in its tracks! I hope you get your dates soon and do let us know how you get on )if you feel like it of course) Best Bells

Hi Bell

I think every health board is different so your neurologist may not need to get it approved with funding. If they never mentioned it then I wouldn’t worry. I will be the 5th person under our health board that’s getting it so still quite new up here.

My ms nurse drew a graph of the ins and outs of each med and the pros and cons as different people will want different things and what side effects each may cause tying in with life like work, kids etc

I really was so confused for a long time and my decision came natural in what I wanted to go for. At first I thought yes it’s Lemtrada as it’s a strong one. Then I dismissed it and was going to go for Tecfidera. But slowly the Lemtrada came back in play but I think a lot of confusion wasme trying to get my head around diagnosis. To be honest I still am.

Thank you for your kind words, and I hope you too manage to come to a choice you know is right for you and keep well.

Lynette

Hello

Thought it might be helpful to drop in an update on my position in case helpful. Since the posts above:

(1) I had an MRI on June, one year after my last one. No sign of any new lesions or any enhancement. Hooray!

(2) I had R2 (15 August). Slightly rougher ride than last year (low blood pressure on D1, temperature on first evening, mother of all rashes the day after I got home but certainly nothing major. Out running 5k within a week, 14 mile walk over the bank holiday weekend and back at work now - and first personal training session on Friday (hooray!). Feeling pretty good - although skin is a bit grim (happened last year). The treatment brought on my period a couple of weeks early (happened last year - and had a dodgy cycle for a few months - so again familiar and not worrying territory). Currently running the gauntlet of infections / diet. Missing cheese and bored of taking tablets (anti-virals/ anti bacterial).

So so far so good. Still confident I’m giving myself the best possible chance of holding this insidious beast at bay for the future. Planning my wedding in May and looking forward to an active 3 week safari trekking Namibia adventure honeymoon! Cross your fingers for me!!!

Good luck with all your choices.

K

Hi Katy

That is great to hear you have bounced back after round 2 although a rougher ride and your MRI was positive : )

I know I will miss the cheese haha when I start but will be worth it.

My ms nurse says my appointment is being sent out to go get bloods done and consent signed, and will now hopefully be set up for October. Eager to get it started now and start fighting it as hate knowing it’s free to do as it pleases now grrr

​Only down side it coming a month later is we had held off a short holiday during October holidays, but following original appt and timeline given was August/September we booked for October : 0

​Sounds like you will be fighting fit for your wedding and amazing sounding adventure after but will keep everything crossed for you too

Lynette