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The Big 3..advice needed!

Hi all,

Looking for some big advice!

Ive had MS since 2003 but it only really started to progress faster 7yrs ago. In that time Ive been on Copaxone, Rebif, Tecfidera, Avonex and Plegridy. Last year I took 2 very serious relapses and ended up in a wheelchair for a while.

So now they’ve brought the big guns out and presented me with 3 options…‘Tysabri’, ‘Gilenya’ or ‘Lemtrada’. Ive read the literature on them and they ALL scare the s#*t out of me but I know if I dont take 1 of them and continue to relapse like last year the future is worrying .

I just wondered if there was any advice you could give that would make me feel more positive about my choices?

All of those drugs scare the s*it out of me too. I am currently researching Tysabri as its an option been offered to myself last week and I’ve generally had a positive response from people I’ve spoken to, regular monitoring via bloods and MRI scans. It seems to be the one I’m certainly leaning towards. Theres some really good info on Tysabri on FB. One of the people I spoke to got liver issues with Tysabri and was taken off it immediately.

Lemtrada - I was speaking to my neuro last week about it, she said I have to inform you of it as an option, its the closest drug to a cure for MS but the risks are so very high (you have about 35% chance of adverse, serious side affects). She told me it was like resetting your immune system and is a similar drug style to chemo. She was very reluctant and had a tone that said ‘don’t pick this one’.

I wasn’t offered Gilenya? So not researched it as of yet…

Hopefully some people will come up who have experienced these drugs and can give real experiences, I need it too…

I think there tend to be a few things at play in this kind of decision (or so it seemed to me when there myself):

  • A tendency to over-value risks over which we feel we have some control and sense of agency (i.e.we can technically take DMDs or leave them alone, so we feel as though we are taking on a risk that is avoidable).
  • A tendency towards loss aversion (i.e. we fear the consequences of a bad decision more than we value the benefits of a good one)
  • A tendency to under-value risk over which we do not feel we have control (i.e. ‘MS will do what it wants anyway - nothing I can do about that.’)

Put them together and what do we do?

  • Let the risks of DMDs loom larger in our minds than they have any right to because getting it wrong would feel like our stupid fault;
  • Dread the small risk of harm from a DMD far more than we dread the big risk of highly active RRMS running riot; and
  • Overlook (or at least underappreciate) the fact that the heavy-guns DMDs really can be game-changers and let us take the fight to MS.

Steffybeth, it would take a lot of resilience to feel truly positive about having highly active RRMS - it is just not a very good place to be. You are asking a lot of yourself there. But I do think that the heavy-duty DMDs are our friends and I hope that whatever you choose stops your MS in its tracks. They really can do that.

Good luck.

Alison

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Hi, I had 5 relapses in 2015 and started tysabri in November. I know the risks as I am JC positive and therefore PML is a risk but anything to give me the chance of leading a normalish life is good.

I chose tysabri because if it doesn’t work for me then I can stop and try Lemtrada. Also the side effects of Lemtrada worried me more than those of tysabri. Its early days but I hope it helps me in time.

Yes its scary but no worse than having MS in the first place.

I wish you all the best with your decision and hope whatever you chose works for you.

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Hi, I am a 5 year Tysabri vet and it has worked well for me. One thing about Tysabri is that once you come off it you are in danger of the “rebound effect” which can be very nasty. If you go the Lemtrada after 1/2 annual infusions you are hopefully finished with treatment. It is a new drug so I guess that could change as more people go through the 5 year mark. Therefore if I was starting out now I would go for Lemtrada as the patway would be clearer as I dont know what is next for me. I dont know much about Gilenya. All the best with your choice. Peter

I have been on gilenya since last March and it seems to work really well for me. Few side fx and no more relapses so I’d recommend it :0)

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I have been on Tysabri for more than four years. In that time, I have deteriorated a lot. When I started on it, I could drive, walk more than a quarter of a mile with one stick and cycle to travel longer distances. Now I cannot drive, can only walk about 20 metres with two sticks and can’t cycle at all.

I believe I should have come off Tysabri a couple of years ago. Maybe I should have tried Gilenya first - I am changing to that now. I know many people have good experiences on Tysabri - but there are others who don’t and they are not so quick to talk about it. Whichever drug you choose, make sure that you talk to your doctor about how things are going and change if they are not going well.

I am too scared to try Lemtrada and think that I am too disabled already for it to be a good choice for me (my disability is not of the kind that gets better between relapses - it is the result of progression).

Everyone’s going anonymous today. What’s that all about? Why are people going anonymous when talking about what drugs they’re trying? Or whether to have children?

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That is not our business, Sewingchick. No one posting in good faith ever needs to justify going anon.

Alison

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I’m still in the midst of the decision-making process too.

I was set for Lemtrada at the end of last year but my new neuro pointed out that it’s essentially a last-line treatment in that at present, once you’ve gone onto it you can’t move onto anything else as it causes permanent changes to your immune system. This is ok just now but there are a number of new drugs potentially coming online over the next few years that it would mean one wouldn’t be eligible for. I was keen to tackle this thing now with a strong DMT as my RRMS is very active but I am now also aware of the fact that one needs to play the long game too…

At present my decision (kind of like Pops I guess) will probably be to go on Tysabri for 18-24 months, see if it’s working and/or if my JVC status increases (I’m +ve 0.9 at the mo) and if it becomes to high risk to stay on it, or it’s not working then move onto either Gilenya or Lemtrada.

It’s such a tough call and incredibly stressful so I do feel for you so much. Just remember that it’s your body and your decision (I know that sounds obvious but I’ve had people trying to influence me one way or another as they’re scared of certain risks…but they’re not experiencing the illness so can’t necessarily understand what it means to go through it).