Last reply 1 year ago
Eeny, meeny, miny, moe..

I was first on Copaxone, then I switched to Tecfidera. Now that medication isn’t working. I’ve now been given 3 new options #1 Lemtrada #2 Tysabri #3 Gilenya

And honestly I’m terrified of all 3. The risks are so huge and when I talk to friends and family they can voice their opinions, but it’s easy to pick if your not the guinea pig being tested on.

I have a deadline to pick. April 1st 2017..

I would love to hear stories about any of them, both positive and negative.

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2 years ago

About me – been RRMS for 18 years – work full time, am 42, and have taken just about everything going: Rebif, Copaxone, Avonex, Tecfidera and Gilenya. So I had been around these decisions many times (and it’s always a crazy spiral of overthinking and thinking etc for me).

I have been doing well but recently have been feeling crappy and, having been off meds for a year, my new neurologist proposed a few options so I am in the process of making my next decision about whether to take Tysabri. I was previously on Gilenya and was advised against Lemtrada by neurologist.

I am no medical professional, but I can explain my lived experience of Gilenya. Firstly, it was like a lightbulb switched back on: I was no longer tired, had no bladder problems, no pain and no relapses. I felt generally more like myself.

After a year I began to experience constant coughs, colds and infections. I ended up spending nearly 3 months indoors because I was so poorly. In the first month, I went to the GP and It turned out my lymphocytes were low – 0.3 – so they wanted to monitor me every 2 weeks but those tricky lymphocytes kept dropping and at 0.1, I had to stop taking Gilenya.

But not everyone will experience what `i experienced and, if my lymphocytes had played ball, I would still be on Gilenya. The benefits were amazing, until I had the problem with lymphocytes.

What I learned later is that my normal level of lymphocytes is naturally quite low on the scale of ‘normality’ – 1.3 – so I had less far to fall before I got to 0.1, If you decide to take Gilenya, your lymphocytes will be baselined and measured every 6 months.

I think with Gilenya you have the upside of lower relapse rate, evidence of slowing of disability progression against a side effect of constant infection. But, if you experience this side effect, at least you can see it coming (because you will sniffling or in bed with a fever etc), and you can stop taking Gilenya immediately if your MS nurse or GP advises you this is the right thing to do. Plus you have the back up of monitoring your blood with a simple test to see how your lymphocytes are doing through the year.

What I know about Lemtrada is once it’s in, it’s in – which is why I was advised against it. But that’s me, and my neurologist and not you, and your neurologist.

So I am left thinking about Tysabri. The challenge here is I am JCV+ and I have to weigh up the benefit of reduced relapses, slower progression to disability vs. having to go to hospital every 4 weeks (and I live 2 hours away) and a risk of developing a rare, but fecking terrifying brain infection – one which I can’t see coming until it’s too late. And, even if its picked up in MRIs, still not awesome.

I am grateful that I am afforded a decision, but it’s a tough one to make. And so difficult to talk about with family because they generally want everything to be OK, struggle with the detail and dwell on the downsides (well, that’s my family). You have to make a decision for you, based on what you know now and how your body is now, because you can’t project into the future.

I hope my experience has been helpful to you. Best wishes etc. I am sure there are loads of people on this forum who can support you too.

Here is a link to the MS Trust’s MS Decisions website which you might find helpful

2 years ago

@sarahbee thank you! It does help, every little bit helps!

2 years ago

I am on Tysabri, and I can certainly recommend it!! It has very few side effects – I don’t have any! – and is very safe as long as your JCV status is closely monitored.

2 years ago

Gilena is not that bad. I have been on it for 4 years now. If your lynphocytes go really low you can always have it on alternate days (your neurologyst will advise , this is also documented in scientific literature) . Gilena did work well the fist few years, now i am going down so i am not sure if my ms is really aggresive but maybe without gilena things would have progressed even faster.. if i had a 2 life and my ms were active i would go for stem cell! Too late now…..

1 year ago

I didn’t want to wait until it ‘got bad’ before trying to stop the progression.

I went for Lemtrada as my first and only treatment and it’s been amazing to have my MS shut down to have my symptoms all disappear and life return to normal

Before Lemtrada I was losing my sight and my legs were failing. nothing on the SE list for Lemtrrada couldn’t be controlled with standard medication and treatment – MS was far more scary than a Thyroixin a day or a tablet for ITP – the other stuff …. statistically they’re no more likely to happen to me than any other person on the planet

1 year ago

I totally understand where you’re coming from. There are so many choices these days, but not without risks. It all boils down to how risk adverse you may be. I stewed over the decision to take Tysabri for over a year. I researched, spoke to family members, several doctors..

Had Neuro’s scoff off my concern with PML, or the rebound 60% of people experience upon discontinuation. In the end I took Tysabri for a little over three years, and then over stayed my welcome and came off. Research had found more issues with discontinuing. and no answers on how to minimize the risk.

I do believe that it works very well for some people, and it was an easy once a month infusion with no observed side effects. Sadly, I’ve moved on to SPMS so it wasn’t working as well for me. Now my Neuro is pushing for the new DMT that should be approved next month that has a host of side effects that include cancer.🤔

Good luck on your selection!

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