Last reply 2 weeks ago
Why do people continue with CRAB drugs ?

I feel really wound up by this post from Barts wonder blog that time after time people are even being offered Copaxone, Rebif etc . In the bad old days when there was only interferon and nothing else then it’s understandable and if they did work for you then woot but why would you chose them?

Article here http://multiple-sclerosis-research.blogspot.com/2018/10/whats-lost-is-lost-why-crab-can.html

Let’s have a heated debate (copyrights to Mrs Merton)

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mamawals
3 weeks ago

Well I know copaxone is recommended for women trying to get pregnant.


vixen
3 weeks ago

Hello @strictlysoca. When I was diagnosed last year, my neuro would not be drawn on recommending a specific DMD, saying that I had to research and decide what was best for me. So, pretty much blindly and in a still traumatised post-diagnosis state I opted for Tecfidera which, as your article suggests, was a pretty good punt. So I guess there is something to be said for giving people the freedom to choose. An injectable/infusion DMD for me wouldn’t really have suited my life style, which is why I went to Tec. That included rejecting Lemtrada, which I believe is a little more effective. But there are lots of people out there who cannot tolerate Tec. This said, I also support the right for people to tread the holistic route and not go for a DMD at all. Some people cannot understand why somebody would not want to take any DMDs, ‘hit it early and hard’ type of thing. But everyone needs to decide what’s best for them. I guess this includes as wide a choice of options as possible, including those that a study has said are not so effective. OK, that was heavy for a Saturday morning! 🙂


nutshell88
3 weeks ago

I’ve been rejecting all types of drugs since 2011 my neuro refused all drugs when i was daignosed in 2005
But this month they said there is no chance i reject gelinya if i truly care about my future
:/ so i accepted
Seems fine so far


stumbler
3 weeks ago

@strictlysoca , if it was your own money, you’d be looking to get the maximum bang for your buck. In this situation, your finances are not involved, so why not go for the best. Or what is suggested to be the best.

You can relate this to the secondhand car market. Yes, you can buy cheap and there’s a risk that your journey may be unsuccessful. In this case, the expression “buy cheap, buy twice” springs to mind.

With MS and our health, we don’t get the option to buy twice!


strictlysoca
3 weeks ago

@mamawals I do wonder about the pregnancy aspect as I thought that women could have Lemtrada and then get pregnant after 4 months.

@vixen It was interesting that Prof Giovannoni said in one of his recent interviews about patient choice/time is brain that if a patient chooses for the doctor to decide the treatment then that is a choice too!

Love the metaphor @stumbler


mamawals
3 weeks ago

You’re supposed to get off Lemtrada to become pregnant and shouldn’t breastfeed on it. There are studies suggesting it’s safe to do both on capaxone, which has been around longer. Obviously that won’t be a huge consideration for a lot of people but that is one reason someone might choose a less effective treatment option.

Also, I’m in the U.S. I’ve been trying to work out what treatment my insurance will cover since June. I have to go with what they’ll pay for because I can’t afford to pay out of pocket. So that will have a huge impact on what treatment I finally do, if I ever get this sorted out. I’d like to do Tysabri, which my neurologist recommended, but who knows if I can get that approved. I’m not sure if Lemtrada is available in the US. I’ve only seen people from the UK mention it and it wasn’t presented as an option to me.


criswell
3 weeks ago

Lemtrada is approved in the USA but you have to fail with 2 other drugs before it can be prescribed by your doctor.


rivka
3 weeks ago

I was started on rebif 3 years ago with very little discussion and I was too shocked to even have an opinion on the choice. Here it is three years later, and I’m still faithfully shooting up. Why? Diagnosed at 55, no new lesions, tolerating it fine. What keeps me awake at night, especially having read all the research now? Would I have less brain atrophy if I take something stronger now? Less chance of SPMS? What if I get some horrid worsening from the newer stronger choice and can’t go back to my baseline?
It’s hard to have a disease with so many choices and so many questions but no answers.


strictlysoca
3 weeks ago

@mamawals sorry to be UK centric. There are still cost issues in the UK but technically if you meet the criteria for a DMT in the UK it can be something more effective than CRABs.

@rivka I hear you! I made a big deal about Lemtrada and then have been happy with Gilenya but I still feel annoyed that when I had the relapse that gave me most disability with Crab.


embroideress
3 weeks ago

@strictlysoca I chose to take Plegridy from the first line choices given by my neurologist. I’m in France and I’ve had three relapses in 40 years (diagnosed at 57) and don’t qualify for any second line treatments. Choices were interferons, copaxone, aubagio or tecfidera. Lemtrada is no longer available in France and Ocrevus, not yet. So we choose according to our situation as best we can. I’m 58 and franky afraid of what a stronger treatment would do to my body. I agree with @rivka there are many choices, many factors to consider, and so I for now I inject every 14 days, at least I can stick to that as long as the neuro says it’s working.


rivka
3 weeks ago

@strictlysoca, @embroideress, thanks. Nice to have a group to discuss this stuff with, who understand the nuances of trying to live our lives day to day while wrestling with these issues.


embroideress
3 weeks ago

@strictlysoca @rivka yes, it is good to discuss this, because the neurologist doesn’t have to live with the treatment each and every day. Mine wanted me to take Copaxone to begin.
I forgot to mention that I also have Essential Thrombocytosis (too many platelets) and the interferon lowers my platelet levels to the normal range, so along with the chills, headache, fatigue for about 48-72 hrs, I have a positive side-effect.


rivka
3 weeks ago

@embroideress, A positive side effect at last! Hold on to that thought!😉


doubleo7hud
3 weeks ago

I’m a married man, be worried if I had crabs… 😂 (glares at milkman).

After a year of farting about trying to make a decision what DMD to take I ended up with Tecfidera as was too late for lemtrada there’s not much of a window I don’t think. Worked out for the better tho as it has less impact on work etc seems to be going well……


doubleo7hud
3 weeks ago

Ps don’t read article till posted 😂 it says tech is better????


strictlysoca
2 weeks ago

Thanks for the ideas 💡

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