Im seeing my ms nurse in a weeks time . Ive been offered the following DMTs.
Lemtrada , Tecfidera ,Betaferon , and Rebif i was speaking to my nurse on the phone this morning and she said she would go for one of the first two if it was her choice but we can speak more about it in clinic next week .
Just want any input from folk on here who will have had them and know all about the pros and cons of each .
Kind Regards Iain .
I’ve been having a conversation with someone recently diagnosed about Lemtrada and my opinion for her situation was that Lemtrada offered the closest thing to a cure. And that as she’d made the choice to go for Lemtrada I thought it was a brave choice and the best one she could possibly make.
But your situation is slightly different I think. Since your neurologist isn’t 100% certain you are still RR, but could be progressive, is that likely to affect the outcome of Lemtrada? I don’t know the answer to that question by the way. But I would suggest that’s one to ask.
Generally, the greater the risk involved in the drug, the greater the potential benefits. Which is why for someone newly diagnosed with RR, in my opinion, the best option if offered it is to go for Lemtrada. The reason is that the disease hasn’t done too much damage to your system over years (the way it has to mine over 20 years with mostly no DMDs minimising the damage from relapses). So you have greater resources to get over the severity of the drug action. Your musculature is stronger so if it works as expected, you can recover from the side effects from the drug and just get on with leading an active life.
However, if Lemtrada isn’t going to work as well because you are further down the disease path, then it’s a big risk to take for maybe less reward. And a drug like Tecfidera is much easier to get out of your system if it doesn’t suit you, or if you continue to progress.
Given your options, personally there is no way I would choose a beta interferon like Rebif, Betaferon or Avonex/Plegridy. If I were to opt for an old style injectable, I’d go for Copaxone (interesting that you’ve not mentioned/been offered Copaxone or Plegridy). The reason being that beta interferons often give people flu like symptoms after injecting. Copaxone does not. I took Copaxone for several years without a single side effect. And if you’re going for a drug with a low relapse reduction rate, but also low side effect potential, for me Copaxone wins over an interferon.
Ultimately Iain, I agree with your MS nurse, one of the first two options would be the best choice. But as for the toss us between Lemtrada and Tecfidera, that might be a question you need a bit more information about, even a discussion with your neurologist with regard to how certain he is that Lemtrada would work for you.
Just my thoughts …
That is a fantastic reply thankyou very much . My neuro said he thought i was closer to spms than rrms but needed to see me in clinic next week to look at me again. Ive had a few hits got over them almost completely , then i got whacked again and ive been walking with great dificulty ever since thats over 4 months now.
I want to smash it head on and give myself the best chance of keeping it caged if it hasnt already escaped. My nurse did say it would mean 5 days in hospital if going with Lemtrada , i can deal with that no problem. What worries me is if ithas escaped and is dancing through my body then the risk as you say mightnot be worth no real gain ,and id be just as well going with Tecfidera which both the neuro and nurse have said is a fantastic drug.
That is why im putting it out there as there are so many years of expertice on hear , mind you may have nailed it first go Sue lol .
Best Wishes Iain .
Thank you. That’s what you get for 20 years experience. Mind you, there’s plenty of people younger (in years and diagnosis) who know a lot more about Lemtrada. And they’ll maybe be able to give you the information you and I lack about being on the cusp of SP and Lemtrada.
Oh how I wish it had been available when I first heard about it in 2002. Back when it was in trials and called Campath. I wanted it then, back when I was fully able bodied and chances are I wouldn’t be the physical wreck I am today. Then again, neither would I be here giving you the benefit (!) of my opinions.
But, in any case, your neuro may not be sure whether you are still RR but you can get further remission, even after 4 months. Sometimes you just wake up one day and realise that you are walking a bit better than you were a month before. It can be sneaky like that. So s/he might decide that you are still in the remitting phase and that it’s worth the risk if you’re prepared to take it. I know that I was still RR for quite some years after I started wondering if it was progressive.
i would suggest any of them! my neuro years ago wouldnt give me any and i had a huge life changing relapse and went straight onto tysabri (different neuro) but it was too late.
much better options now and u have had some good advice from ‘the wise one’!
Hi Ellie .
Im happy with either of the first 2 offered , lemtrada will mean 5 days in hospital and getting a good blast . Tecfidera is a tablet for life . My nurse has said they are both great drugs and will do a great job in stopping relapses which is what its all about .
I want to try and smash it asap and i guess ill have a good chat in clinic at the end of the week with the nurse .
Sue gave some great advice and there are lots of people on here with vast experience , so your never lost if you need advice lol .
Best Wishes Iain .