Just was wondering if anyone could help me give any advice for this big decision I have to make. I feel extremely healthy and I’ve only ever had one relapse over two years ago but my brain is saying differently. I have just got the results to my latest MRI and I had a load of new lesions with many being active and so need to go on something strong. My choices are between Gilenya and Lemtrada and I just don’t know what to do. Lemtrada seems to be no going back and this scares me but if it stops me having relapses then it is worth it? But Gilenya might also do this… It just worries me that my neuro is suggesting Lemtrada which makes me think things have got quite serious and I should therefore not waste time and go on Lemtrada…
I am so confused as to what to do and I know they want an answer quickly as apparently time is of the essence for me. Any advice would be really appreciated.
This isn’t advice as such, just my view on both these medications. I am currently on Copaxone which isn’t working as I have had 2 relapses in one year since I have been on it and I have been given two choices, Gilenya and Lemtrada. I have chosen Lemtrada, so just waiting to hear back from the neurologist for the go ahead. I have done a lot of research on this, yes there are serious side effects, however you are monitored very closely, so I am not put off my this treatment. From my research I have found that most people that have had their first course of Lemtrada have noticed improvements with their symptoms or that there symptoms haven’t got any worse, these improvements may be only slight but that will do for me. My symptoms, at the moment, are “mild” and my ms nurse said Lemtrada is ideal on people like me, and hopefully after having Lemtrada my symptoms won’t progress.
Have you looked online? There are some videos on YouTube which follows people during their treatment of Lemtrada, which has helped as it does show you what to expect, I know everyone’s different but at least you are prepared! There is also a blog online go to www.davidscampathstory.org which goes through his first year of treatment, second year of treatment and then up to twelve years after treatment.
To be honest I haven’t really researched Gilenya, only read the information leaflet I was given at the hospital and have also looked on MS Decisions. It does seem like an effective medication, but Lemtrada seems perfect for me.
Obviously it is personal preference, hope this helps you make a decision.
I too have a lesion rich brain (and spine) but thus far, i am not labouring under any disability. Obviously i would like for this to continue, and i would prefer to indulge a DMD therapy that doesn’t compromise my quality of life by bringing with it, a menu of side-effects.
The two options which you are limited to are significant therapies in their effectiveness, but i have not had any personal experience of either. But, having been on tecfidera for way over 12 months now, and still (by hook or by crook) i have remained relapse free, its efficacy seems to be ‘as advertised’… so far…
I do not know if there is a reason for why tecfidera is not suggested as a viable option for you; perhaps there is a reason for why this post would be a waste of time. But… just in case it was simply over looked, i suggest it as being an effective middle ground between ‘big gun’ drugs and doing next to nothing at all (eg. taking an interferon etc)
Kelly thanks so much for sharing your decision making process, it really does help to hear from others I find. Lemtrada does seem like an amazing drug and with such a high success rate it is hard to just overlook it. Part of me feels I would regret it if I didn’t go for it and then suffered a relapse on Gilenya that I might not have had on Lemtrada but also the commitment to Lemtrada is so huge (5 years) that it does scare me. Have you heard of this drug Palifermin? I don’t know much about it but it is being researched at the moment and due to be completed in 2017 which is meant to boost the function of the thymus, the gland in the neck which makes new immune cells I think. Lemtrada has a 1 in 5 chance that when the immune system grows back it attacks other parts of the body so if this new drug was affective it would definitely make me lean towards Lemtrada. I literally keep going back and forth though on my decision I still don’t know what to do!
Paulo thank you so much for your comment too and taking the time to do so, unfortunately I have already tried Tecfidera and absolutely hated it! It made me feel so sick and when i went on the higher dose my throat closed up and so it was not a viable option for me which is a shame as obviously you and so many others love it.
I can only comment on Gilenya as I haven’t experienced Lemtrada.
I have been on Gilenya for 2 years - where has the time gone? I switched from Rebif as my neuro felt Rebif was no longer working for me after I had two disabling relapses whilst on it. He did say he would’ve spoken to the campath team for me if I liked but it was still in the trial stage at the time and I wasn’t quite ready for such a big step at the time. It was a big enough shock having to think about giving up the security blanket that was Rebif!
Prior to starting Gilenya, I had an ECG, a test for antibodies to shingles and the usual LFT blood tests. My ECG was apparently not quite normal and I had a full heart scan which came back all clear.
For the first dose, you have to be monitored constantly for 6 hours as it can cause your heart rate to drop. The main issue here is boredom, so I had plenty of things to keep me occupied on the ward. After that, you just pop a pill every day and get on with life.
So, 2 years on, no relapses, no side effects, rarely catch any illnesses. That had been a worry because I was told Gilenya can lower your resistance to infection but I haven’t had any nasty bugs to worry about so far. I work in a high school surrounded by sick children and teachers and I have the best attendance record out of them all. This amazes the HR department!
Best of all, no needles . Good luck whatever you decide.
I went for a second opinion on Friday and saw a great neurologist called Dr Chattaway. He was amazing and helped me so much.
He looked at my scans and heard my history and within minutes told me his gut feeling was that I had to go on Lemtrada. The activity on my MRI’s was worrying and I have just been so lucky that I have somehow not had any relapses and am still seeming so healthy but this luck will run out. He said that given my age and how fast my MS is progressing that I should be bold and hit it as hard as I can, which is Lemtrada.
It is very scary stuff but right now I just feel a great sense of relief that I have now made my decision and there is nothing more to think about. I am going into hospital on 11th January to start treatment so at least I have the chance to enjoy Christmas before putting on my fighting face and attacking this with all I’ve got!
Thank you again and for the blogs, going to start reading up now.
That sounds like really good progress. It is so helpful when the expert has a clear view on what to do next and explains why (even if the ‘why’ bit isn’t great news!)
Good luck with the Lemtrada. It really is one of the game-changing treatments that can stop MS in its tracks.
Excellent news. The impression I get is that Lemtrada works best on people who are less disabled and are fairly early on in the disease. So it should all work out well for you. In a couple of years you’ll be saying MS? What MS?
Just got another question for anyone that has gone on Lemtrada, about how much time they had to spend off work or how long they recuperated for?
I’ve told my job this morning and they are being really supportive but I can see the worry on their faces of me potentially being off for a long time… I hope it isn’t too long.
If your MS is currently mild I imagine your recovery will be uneventful and likely to resume normal activities within days. Its those with longer standing disease that seem to be knocked of their feet.
Hi, I had another mri today & am seeing a MS nurse for the first time on the 21/12/15. The last time I saw the neuro I told her I would like to try Lemtrada or Tecfidera. She didn’t disagree but told me to read the leaflets ect she gave me & she’d wait till she had the result of my latest mri. Paolo Smythe among others on here seem to have a lot of faith in Tecfidera so all being well I’ve decided to try that…fingers crossed!! Can anyone tell me how I get the meds, do I get a three month prescription or …? I hope everyone’s as well as possible. X
Congratulations on your decision. The most important thing is that you are starting something!
It can be testing to opt to start some form of drug therapy, (which can list a number of side effects,) especially when currently, your MS is not significant with symptoms. Prevailing wisdom says it is better to get as early a start on a DMD as you can following positive diagnosis.
As for how you start to receive deliveries etc… i do not know i can be of help as i am in Canada and things might be different where you live. I am sure all such things will be covered when you announce your interest in starting something.
One piece of advice i would offer, considering that you will likely be provided with several months of drug at a time, is to request that you receive the 120mg capsules initially (or until you tell them otherwise).
The usual full strength capsule is 240mg twice a day. if you are one of those for whom it takes a while to get used to the drug (ie. you get stomach ache or flushing) you will find a more gradual increase in total daily dosing is easier than swallowing the full strength caps after a week or two.
Old school logic was that side effects would likely happen, should be ‘toughed out’ and then would simply sort themselves out. I disagree that such a trial needs to be endured and such can be avoided and should be!
Good luck with it all! You have made the best decision for you.
Hi Paolo, thanks for your reply, had I forgotten you’re in Canada as I had read it on one of your previous posts. Hey maybe someone in England may know the answer? I think I should have been getting some meds by now as I have been almost unable to stand/walk since January this year. Appointments for hospital, tests ect take sooooooo long. I feel confident that Tecfidera is the DMD for me so I hope my faith in it proves true!!! Yes I wll tell the neuro that i want to take the lower dose & build up to the higher dose. Thanks for your good luck wishes, I will write on here how I get on.
That’s good news. I wish you all the best on Lemtrada. My consultant helped me come to a decision too. Lemtrada was still in the trial stages when I made my decision but I think, if Gilenya stops working for me, it will be my next choice.