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Share yourTecfidera and Lemtrada experiences with me

So, I’m on the verge of starting on Tecfidera, but only as an interim treatment before I’m given Lemtrada. I started on Tysabri in April last year, but I relapsed in August (previous relapse had been March) then again at the beginning of January this year, so it’s all change for me now. Initially I was going to get the Lemtrada on the week beginning April 20th as there’s a 3 month flush out period after the last Tysabri infusion. But I asked for a postponement as I was ill at the time. The MS was happy to comply as she was still waiting on info from other people about the treatment.

I’m the first person in the area to be given Lemtrada, so they basically have no idea what they’re doing, bless 'em. I’ll be getting the infusions as an outpatient which I’m a little nervous about, I’m staying with my mum for the 5 days as the MS nurse says I must have someone with me, but the thought of the journeys to and from the hospital each day don’t exactly fill me with joy. It’s only another 15 minutes or so further from my mum’s, so 45 mins on a clear road (lol…it’ll take way over an hour, definitely), but I suffer from motion sickness, and if I’m likely to be feeling ill will flu-like symptoms before I even get in the car…urgh.

This is all nerves, I know. I might be lucky and have only the most minor of side-effects, and not need my mum to bully me into crawling out of bed each morning because I just want to stay there and feel massively sorry for myself. But I’d love it if other people can share their experiences with me so that I’m less in the dark.

Same with the Tecfidera. The MS nurse wants me on this because she doesn’t like me going for an extended period with no protection. I did question that, because if the Tysabri wasn’t working then surely I never have been protected, right? But she said it wasn’t exactly not working; and as I’ve relapsed again, just 3 and a half months since the last one, since the infusions were stopped, I now see what she meant! So I’m cool with going on the Tecfidera until they’ve got themselves sorted out and know exactly what they’re doing with the Lemtrada. But again I’d love some first hand info. =3

I’ve been on Tecfidera since October, so seven months now. All going well, no side effects worth talking about really. I get a bit hot a few hours after I’ve taken it but aside from that it’s been a doddle.

That’s the kind of stuff I want to hear, lol! I really shouldn’t be on if for more than 2 or 3 months, I’d have thought, but I’m not counting my chickens as far as that goes.

Dear JellySundae…

If you are going to start on Tecfidera, why are you then switching to a third DMD thereafter?

I have been eating Tecfidera since last summer. I suffered a few moments (truly, mere passing moments were all that they ever amounted to) of stomach cramps and also, patches of itchy skin.

Both were resolved with paracetamol (for the cramps) and anti-histamines (for the itches).

Tecfidera is a twice daily pill with meals. No infusions, no needles, no messing about, no getting kicked out of bed by your mother, no driving yourself to the local outpatient’s department.

It is painless, safe, highly effective, convenient, comes with zero ‘flu-like side effects’ and is available to you now. I think you should give tecfidera a fair shake of the stick and save Lemtrada for another day. (But i don’t know you or your set of circumstances and so…)

Good luck!

Hi Paolo :smiley:

My neuro wants me on the Lemtrada because my MS is highly active, so he wants me on a stronger treatment. When I saw him at the beginning of the year, after the Tysabri had been stopped, he offered me the choice of the two (because that’s what they have to do now, isn’t it, they can’t just say, “we’re putting you on this”) but when the MS nurse asked him which he wanted me on (I was in the next room by then, but I have excellent hearing ;D) he said, “the strong one” so I suspect that if I’d shown a preference for the Tecfidera he’d have tried to nudge me towards the Lemtrada.

I think it’s the MS nurse more than him wanting me on Tecfidera in the interim. I think just because it’s ending up taking a lot longer than she’d expected to get things underway with the Lemtrada.

I am interested to see how I make out on the Tecfidera, but it does seem that both the neuro and the MS nurse think it’s not the best option for me in the long run. It’s really heartening to see people on here who’ve had minimal side-effects though, makes me feel so much less worried!

Hi

I’ve just started Tecfidera. I have been given a months supply of half dose (2 x 120mg duly) and a months supply of full dose (2 x 240 mg daily). I have had two weeks at 2 x 120mg and with the only side effect being the odd headache more than normal so far…although it’s hard to tell, as I get quite a few anyway. I plan on going to a 120mg in mornings and 240mg at night later this week and have my fingers crossed side effects stay away.

This is my third DMD due to bad side effects on Rebif and lipoatrophy dents created by Copaxone. Hoping this one is going to be a better success. :slight_smile:

Mish x

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I’m 6 weeks post Lemtrada infusion. Newly diagnosed in dec 14 after sensory symptoms following the birth of my daughter. Never had a dmt before but was given the choice of injectable’s/orals or Lemtrada. I wasn’t eligible for tysabri as I hadn’t failed and other dmt and I wasn’t classified as aggressive to use as a first line.

Many may think picking Such an aggressive treatment as my first drug unwise. I’m not disabled in anyway and have a very good quality of life. I picked Lemtrada because I want to stay that way. Research shows Lemtrada works best early in the disease when not too much damage is done. It stops relapses by about 75% and there are trial people who have been relapse free for 15 years. If I waited admittedly I may be fine but I may not and by the time I’ve had a severe relapse it could be too late.

If if you read the Barts blog they are very much treat aggressive and early for best outcomes. I’m of that mindset but I appreciate others are not and the side effects of Lemtrada have to be seriously weighed up.

The infusion week really was fine. The worst bit was the cannula! I was exhausted and slept the weekend after but by the Monday I was pretty much back to my usual routine and started running again the week after.

Good of luck with your decision. Message me if you have any questions I’d be happy to answer.

x

You’ve made me wish i was on the Lemtrada route, but i don’t think it is available over here in Canada.

Relapse free for 15 years? I could handle that!

I remember about 10 years ago first hearing about Lemtrada (Campath as it was called then). It sounded like a wonder drug and I so wished I could have been on the trial. I’d definitely go for it, in your position it has the best / lowest relapse rate. If I’d had it 10 years ago its unlikely I’d be as disabled as I am now (wheelchair user etc etc). I’m officially still RRMS so am now on Tecfidera - I failed on all the other DMDs for one reason or another. Tecfidera is a good drug for lots of people but I for one am a bit cheesed off with feeling vaguely nauseous a lot of the time. For me it’s not so bad so as to make me give up just yet. I reckon it’s worth a go especially since my experience has been that if a neurologist says a treatment ‘should be in place within 3 months’, it’ll probably take twice as long.

Good luck Sue

Sue, do you not have the option to try Lemtrada now? There are stories about people who were in wheelchairs being able to walk again eventually. Actually, this thing my mum linked to says dance. But it’s out of one of the papers so…

Paolo, if it’s not available there yet, I’m sure it will be soon. How does medical stuff work there though? Do you have to pay for treatment like they do in the US? The cost of Lemtrada is pretty horrific, I think it’s £56,000 altogether or something, which is…107k CAD according to Google D:

Mish, good luck with the Tecfidera then!

Bagpuss, I will! I think I have a question now actually :smiley:

I have a vague feeling that Lemtrada is only available for people in the early years of RRMS, and I’ve had it 14 years. In fact last time I saw my neurologist he was scribbling notes - names of current treatments - and putting lines through everything I’ve already tried or is unsuitable for me or I wouldn’t qualify for. Lemtrada was quite firmly crossed out and I was left with Tecfidera. So if I fail on it, or if it’s decided that I’m SP, that’ll be that! Obviously I might be wrong about the eligibility criteria for Lemtrada.

I have to pay a ‘deductible’ for my meds… for all meds… but this is a fraction of the total annual cost of the pills and there is a ‘means based maximum’ that this deductible can amount to.

Plus i have employer subsidised health insurance which coves a chunk of change too.

And so after paying for a tiny fraction of about four months worth of Tecfidera, it now costs me $0.

It’s true to say that once done, my annual ‘out of pocket’ expense runs to thousands of dollars… but frankly, the efficiencies this helps to fund; from being consulted to prescribed and counselled, frankly i would pay double that, to avoid the limboland that so many in the UK seem to have to endure.

From seeing other comments on here, is there a PML risk with Tecfidera? If there is, my MS nurse neglected to mention this.

Though maybe she alluded to it by saying, “You’re JC negative aren’t you”…

Basically, no not really. So don’t worry.

But with full disclosure… the risk of PML is something i understand is considered as part of the regular blood tests you have, especially during the early days of taking tecfidera.

There has been one PML death incident with a tenuous connection to tecfidera.

An elderly patient with multiple health challenges, as part of a trial, before tecfidera was publicly and widely available, was taking the drug along with others for a number of years. frequent bloods test showed a dangerously low lymphocyte count but the patient wished to carry on as normal anyway. 18 months later they succumbed.

there is no evidence to state that tecfidera was a direct cause. but because it was being administered around the time of death, it cannot be 100% ruled out as a contributing factor. this fact was seized upon by the competitors of Biogen Idec.

the moral of the story is, get your bloods counted on the regular. this is applicable to all DMDs i believe.

i had my blood counted pre-tecfidera and was 1.8 (middle normal). 3 months later i was 1.0 (low normal) six months since starting tec, levels have rebounded back up to 1.3

i will continue to visit three monthly for hopefully the first 18 - 24 months and then switch to six monthly or maybe even annually.

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Ah right! Thanks for clearing that up :slight_smile:

Once I’m on Lemtrada I’ll need to get bloods done every month as there’s a high risk of thyroid issues. Seems it’s once every 3 months with the Tecfidera, so a minor break from regular stabbies for me! Hopefully won’t need any more drawn until August as I had some taken last week.

Yesterday and today I came downstairs to find missed calls on my mobile. I’d not have wanted to answered them even if I was downstairs, because it’s always spam callers trying to sell you something, isn’ it, but I am waiting for my Tecfidera… Yesterday I stuck the number into Google, expecting a load of results on the sites that catalogue phone spammers but there was nothing to be learnt other than it was a Northampton area code.

The number today was just a few digits different from yesterday’s, so I figured it was from the same people. So I took the plunge and called it back on my (ex-directory) landline. So if they were cold-callers they’d not be able to nab my phone number. It was the delivery service for the meds though, and they’re bringing them on Tuesday morning. :slight_smile:

So Wednesday I’ll be starting on the big breakfast regime!

Re the big breakfast - I started with porridge (in the winter it was fine, not so sure now), then tec then toast & peanut butter. I then cut the porridge out, just toast & peanut butter. Just lately I’ve swapped though. I’m now taking dose 1 with a cheese sandwich at lunchtime. Actually I feel less nauseous than with breakfast. Dinner is always more than 4 hours after lunch so it’s easier.

Good luck

Sue

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I had my first dose of Lemtrada last week and it was fine. No issues but early days I guess.

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Sue, several people have said how they take their first dose later in the day. I think I’m likely to end up doing that too, as I don’t want sizeable amounts of food during the first few hours after waking. I’m cool with porridge once I’ve been up a while though, but I also take some time to eat it! It’s a fairly big bowlful that I end up with as I supplement it with seeds and nuts and dried fruit, but because of the extras in it the texture’s altered so it doesn’t set into a nasty lump once it’s down to room temperature. I’m feeling hopeful about this now, rather than nervous!

Humbug, that’s fabulous! No side effects at all during/after the infusions themselves?

Im just recovering after having steroids for another relapse. This is what I call my 3rd relapse in 10 years. I was diagnosed after my 2nd relapse within 3 mths of my 1st episode. Over the years, I have had small episodes of pins & needles & sharp head pains (left over from my 2nd relapse) and have been given oral steroids from time to time from my gp.

My appointment with my neuro is in August & after looking at my options, Im hoping, he’ll suggest the Lemtrada route, but I have got a few Months to wait and I am rubbish at waiting. My gp has written to him to try and get an MRI done before I see him, to help with the decision making.

Fingers crossed for me in August. I want to remain as symptom free as possible for the rest of my life.