lara279 07/02/18
Last reply 4 months ago
Blood order made – my treatment decision

Hello everyone,

I joined this site back in November when I was diagnosed with RRMS. I didn’t know anything about MS at the time so I had a lot to learn. I had a sensory relapse in November and an MRI identified a small number of silent lesions in my brain. Since then I have been reading everything I could about MS and the treatments available, trying to get my head around it all. I used this site a lot to read about peoples experiences and the posts on treatments so it just occurred to me, as I received an email from my MS nurse about ordering my blood work ahead of my treatment, that perhaps other people might be interested in reading about my experiences and the reasons I chose the treatment course I have chosen, so here it is…

I went into my first meeting with my neurologist in December pretty intent that I wanted to be given Lemtrada, my reasons for this were as follows;

1. I am 33 and may want to have children so the fact that I would be able to get pregnant 15 months after starting treatment and not run the risk of being totally unprotected from another relapse was very appealing.

2. The assumption that whilst there is no disease activity then also the disease is not progressing is obviously a big positive and also the stats I have read around brain atrophy for people who have been treated with Lemtrada look very good.

3. I like the fact that it has been licensed for use since 2001 so he long term safety of the drug is reasonably well understood. Also that there is a lot of data available for people who have been treated with the drug for MS, the initial trial data but also now an large and increasing data set for people treated since it was licensed for use on pwms.

4. I think the known and common side effect of developing a thyroid disorder is a risk worth taking and a lifetime taking thyroxin feels manageable and highly preferable vs the alternative.

In the meeting my Neurologist suggested I look at Cladribine as an alternative.

I looked at the informaiton available and based on trial data Cladribine this looks almost as effective, but with far fewer side effects and a far less arduous post treatment monitoring protocol so I started to think that this could be ‘good enough’. I also thought that given the rate at which medical science is progressing, it doesn’t necessarily need to be ‘good enough’ for ever, 10 years could be enough time for something even better than Lemtrada to be discovered and I could have that if Cladribine didn’t do the job long term.

My concerns with this were as follows;

1. Opting for a slightly less effective drug does make a relapse statistically more likely – what if I relapse and it is terrible and I lose some mobility or my sight and I never fully recover. I will obviously be thinking ‘what if’ and that I should have gone all out for the most effective treatment available.

2. The data set on the efficacy of Cladribine is a lot smaller so a slightly less well known option

3. What if the NICE change the guidelines or funding gets cut and I am not able to have Lemtrada in the future, if Cladribine does not work for me, having passed up the opportunity now.

I had a meeting with my nurse on Monday and we have agreed that I will start Cladribine as soon as I have had my blood tests and the drug is available at Kings.

I will keep you informed about how it goes for anyone who is considering this as a treatment option.

I am pretty happy with my decision – fingers crossed it works!

Lara

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wjgregg
5 months ago

Good luck Lara. You have obviously thought long and hard about what is right for you. For what it’s worth, your thoughts and decision seem eminently sensible and made for all the right reasons. I look forward to reading happy news over the coming years.

Best wishes,

Jon


lara279
5 months ago

Thank you Jon – I really appreciate that


stumbler
5 months ago

@lara279 , thanks for sharing your rationale for the treatment that you’ve opted to use. This will help others going through the same process.

Try not to worry about the “what if” scenarios. Nobody knows what the future holds, so live for the here and now. 😉


lara279
5 months ago

Thanks @stumbler – I guess I am a bit overly analytical by nature. The uncertainty drives me a little mad!!! Still – feeling good and looking forward to ‘getting on’ with it now. I know I am very lucky to have these options availble to me now – it doesn’t escape me that the last 10 years has made all the difference for pwRRMS. Let’s home they make similar progress for pwPPMS and pwSPMS in the coming years.


curious-one
5 months ago

All the best!

I’m planning to hop on the oral cladribine once it hits Australian shores in May. Keen to hear your experience with it 🙂


lara279
5 months ago

Hi @curious-one – thanks for your well wishes. I’ll be sure to keep you updated. Just went for the blood tests so they can check my levels and screen for infections. One step closer!!


lara279
4 months ago

Hello everyone – an update to my short-lived dalliance with Cladribine; having done all the screening tests and just now waiting on the prescription, I have been told by my neurologist that I don’t meet the criteria. Ironic given she was the one that suggested it. Further Irony in that when she had suggested it, I went away and researched the drug and one of the first things I noticed that I didn’t meet that stated NICE criteria. I assumed there must be some level of flexibility or autonomy in terms of what each neurologist prescribed, otherwise she wouldn’t have suggested it, or so I thought. Anyway it turns out they just hadn’t checked the guidelines. I will be going on Lemtrada instead which is more expensive for the NHS and not my first choice, seems a bit mad to me but I know I am fortunate to have this as an option so onwards and upwards as they say. I guess intel in how Lemtrada goes is a bit less interesting that Cladribine since lots of people have had it but I will update you nevertheless once I get going.


sciencegeek
4 months ago

Hi Lara – Don’t give up hope for Cladribine if it is what you want. I went through the same process at King’s as you. But I was adamant that I did not want Lemtrada. I was referred to Bart’s in East London where they do off-label Cladribine even if you do not meet the NICE criteria.

Ask your Neurologist at King’s to refer you to Dr. Klaus Schmeirer at the Royal London (part of Bart’s) and you can talk to them about Cladribine injections, rather than tablets. The eligibility crieteria are different.


stumbler
4 months ago

@lara279 , this annoys me. NICE Guidelines are just that, guidelines!

A guideline is “a general rule, principle, or piece of advice.” Why do Neuros have no balls to use their initiative, especially if it saves the NHS money?

That’s a rhetorical question. 😉


lara279
4 months ago

That’s interesting @sciencegeek – was this since oral Cladribine has been licensed? I assumed that off label injections would have been stopped once the oral version was available as I assumed the license would prohibit it?


sciencegeek
4 months ago

Yes – I am starting treatment on 19th March. The license for the oral form does not prevent the use of the hairy cell leukaemia verson as injections for treating MS.

Of course, the other version(s) of Cladribine could be withdrawn. That’s what happened with Campath/Lemtrada, so that the cheaper Campath can’t be used instead of the more expensive Lemtrada version. But for now, you can still have the Litak (Leustat) version of Cladribine for MS.


lara279
4 months ago

Thanks @sciencegeek!

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