Last reply 1 week ago
Treatment for rrms

Not long back from the ms specialist clinic where I met the neurologist and my ms nurse (only took 3 months!) but they were talking about treatments I can take, they mentioned the biggie lemtrada, which sounds scary being in hospital plus the side effects being thyroid problems put me off, the other two drugs are Aubagio which I’m not liking the whole hair thinning side effect and tecfidera which even though side effects not great looks the best out of a bad bunch. Has anyone been on any of these treatments and how were you on it? I know everybody reacts differently but just looking for some info.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


lightning87
2 weeks ago

Hey
I just met with my nurse on Tuesday and I decided to go with Tecfidera which I’m starting in September. I was tempted with lemtrada but think I’ll try the Tecfidera first as he did say Lemtrada is more aggresive.
I’ll let you know how I get on when I start, I’m delay starting them until after I come back from holiday 🙂
x


stumbler
1 week ago

@chezn87 , a potential thyroid problem, easily treated with a daily medication, is a small price to pay to potentially kick MS into touch. So, don’t discount this too quickly.

Tecfidera is the less effective option, involving two tablets a day, potentially for life.

You can find personal experiences of both treatments by using the Forum Search function (magnifying glass, top left). 😉


grandma
1 week ago

I’m on Tecfidera, after 23 years on Avonex, they are wavering on whether the rrms has become spms and anyway the Beta-Inferon was no longer working. I have to say that after 23 years of needles it is lovely to just take a tablet twice a day, biggest problem is remembering to take the evening tablet! Been on it for 6 mths and apart from the expected side effects in the first few weeks so I’m more than happy😍


chezy17
1 week ago

Hi.
I’m just about to start Cladribine, the idea of Lemtrada was too much, wasn’t keen on Tec either so this one seemed the better one with less side affects.
X


chezn87
1 week ago

My neurologist is only offering me between those three but I’m thinking of going for tecfidera as it seems to have less scary side effects, with still working and two daughters to run after (not literally lol) I don’t want to be too unwell.


chezy17
1 week ago

I know what you mean, less impact your life, I’m exactly the same. I have a 10 and 5 year old to look after as well as working in a school so the side affects the better. X


stumbler
1 week ago

@chezn87 , just thinking out loud, would two tablets a day, to be eaten with food, fit comfortably into your schedule with your two girls?


lacemister
1 week ago

I am choosing lemtrada due to the close monitoring and early signs of side affects which are all treatable. I also like the idea of being at Addenbrookes hospital for the treatment.

I found the choice tough but start lemtrada on the 20th August .

Good luck in deciding what is right for you


zarah
1 week ago

Am due starting Lemtrada on Monday as much as the nerves are starting I think the bigger picture of Lemtrada outweighs the side affects which are closely monitored n treatable. Good luck with whatever treatment u decide xxx


lightning87
1 week ago

Another factor for me was that once it’s in your system, you can’t take it back out. We aren’t currently planning on any more kids but I didn’t want to put a big full stop on it just in case xx


ashory
1 week ago

I wouldn’t be ruling out Lemtrada because you might want to have more kids. My Neurologist actually encouraged me to have Lemtrada because I told him I wanted to have kids in the future and Lemtrada allows for this. It’s actually recommended to women of child bearing age over other drugs.

As for my experience I had my first dose in 2016 and second dose in 2017. I was out of work for 3 weeks after the first dose and 2 weeks after the second. I haven’t had any negative side effects since, am very closely monitored and each of my MRI’s since have shown no additional lesions or progression.

I have had no severe relapses and only have to live with the issues I developed pre Lemtrada.

I don’t know if it was Lemtrada that has stopped my MS in its tracks or if it was just luck but what I do know is that regardless of the outcome I wont ever have to sit here and say “what if I had chosen to take the drug proven to be more effective than most others?” Yes it was scary going through treatment but not as scary as the thought of MS running rampant through my body.


lightning87
1 week ago

@ashory that’s really interesting, my neuro had said that they wouldn’t recommend starting lemtrada if I wanted to have more kids – not that we are planning to but I didn’t want to rule it out.

To be honest, I think I would prefer to hit it hard and fast but not sure if it’s too late to change my mind?


stumbler
1 week ago

There seems to be some disinformation being circulated about whether Lemtrada is family-friendly.

I tend to go by specific details rather than Neuro hearsay. And, in this respect, check out :-

https://www.mstrust.org.uk/a-z/lemtrada-alemtuzumab

Especially the bit that says, “Women of child-bearing age must use effective contraception during and for four months after a treatment course.”, which suggests it is family-friendly.


hollylb10
1 week ago

I was only offered tecfidera and the injectable drugs. I wanted lemtrada but it was sadly not an option for me. I was diagnosed at 27ish. 5 years later and after 2 years on tec I am drug free.

The reasons for this being that tec didn’t fit into my lifestyle, after 2 years I still had not got into a routine and was missing it all the time. I resented having to force myself to eat so I could take it without side effects and I put on a lot of weight. They offered me the other two drugs again but I refused. If I can’t take a tablet twice a day like hell am I going to find the time and courage to inject myself!

If there was another option I would consider it, but when I have enquired about other drugs I am told my MS is not active enough. Which I guess is a bonus. However, my last scan at the beginning of the year showed new lesions from my first brain MRI which would have been early 2015.

I must say the lifestyle changes I have made I am sure have made a positive impact on my MS.

It’s your body, do what you feel is best. I chose to believe in a positive attitude and I think it’s helped me massive amounts x


vivien
1 week ago

I’ve been taking tecfidera for 6 months this week and other than the fatigue at the start and a couple of bouts of colitis when I’ve taken it outwith mealtimes, I’ve been fine. I’ve not had any relapses in that time and my MS nurse advised that it takes up to 6 months from starting treatment for it to become effective. I started with 3 lesions last February and developed optic neuritis in November, so we’ll have to wait and see if I relapse in the next couple of months or if I’m on an even keel now. My next scheduled mri is January, so time will tell if it’s potentially working or not, fingers crossed 🤞 it is!
Good luck and feel free to message me if you need any support or tips when you start taking it @chezn87!👍🤗


ashory
1 week ago

@lightning87 see Stumblers post above.

Provided you wait the recommended timeframe after receiving a dose there has been no indication that Lemtrada is not pregnancy friendly. I am actually trying to conceive now, with my neurologists support.

You would be best putting off having another child for about 15 months due to the fact you have two doses 12 months apart and then need to wait out the 3-4 months period where you should not fall pregnant. However, I have read if you fall pregnant 4 months or more after the first dose your second dose would be delayed until after giving birth.

If your neurologist has stated that Lemtrada is not pregnancy friendly and you will not be able to have anymore children after committing I would suggest collecting all of the evidence that says otherwise and challenging them. Particularly given they seem to have provided you with some misinformation.

Lemtrada is a very serious commitment and you should read as much as possible on your own, from reputable sources, before making a decision.

Don’t forget you must commit to 5years of monthly blood tests if you choose Lemtrada, annual Pap smears, skin checks, cannot receive live vaccines etc etc. all things which I have found to be a small drop in the bucket given the results I have had.

I highly doubt it’s too late especially if you haven’t started treatment yet. It may be worth giving your Dr a call. Just make sure they actually listen to you and don’t brush you off, the best way to do this, is again, by completing your own research and presenting it to them.

Good Luck!


lightning87
1 week ago

Thanks so much for all the advice. I think I do need to do more research. I thought once it was in your system that was it, that’s obviously wrong reading the above posts and link stumbler posted.

I am really sitting on the fence with this. Do I try Tec first and leave lemtrada as the next option if Tec doesn’t work?

I feel like I want my neuro/nurse to say which one is better for me rather than decide, it’s too difficult!!

Xx


stumbler
1 week ago

@lightning87 , it’s best if you do the research then you can participate fully in an active discussion with your Neuro, rather than just be told.

Sometimes, Neuros don’t know best, as you’re probably questioning now. So, it’s your responsibility to manage your own destiny. 😉


lightning87
1 week ago

@stumbler I don’t want that responsibility 😂😂


stumbler
1 week ago

@lightning87 , it’s your body. You have to take responsibility!!!!

We’ll help where we can. 😉


lightning87
1 week ago

@stumbler I refer to be told what to do so I can blame someone else when it all goes wrong 😂

I’m joking by the way haha. I think I will start on Tec and see how I go. At least I know lemtrada is there as a potential option should Tec not work.

Sorry to take over your thread chezn87!!! X


lightning87
1 week ago

Like I can blame my phone for missing the P in prefer rather than my own clumsy fingers 😉


arbee
1 week ago

Everybody is different so what works for one person may not work for another but I did some research when I was in your position (around this time last year) and I saw more positive stories about Tecfidera than negative and I liked the idea of taking tablets rather than injections so I went with it and I’m happy I did.

Not gonna lie, first couple of months were quite tough as my body got used to it but now I barely notice taking it providing I eat the right foods with the tablets and I’ve been relapse free so far so it gets the thumbs up from me but it won’t be the same for everybody unfortunately. My neuro said to try it and if it doesn’t work/agree with me we’ll try something else so don’t feel this is a once in a lifetime decision, whatever you decide you can always change your mind in future.

Good luck, hope you find something that works for you 🙂

Post Comment

You must be logged in to reply to this topic.