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!
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