Lemtrada: What next?

Lots of people have asked me questions like, “how do you know if this treatment has worked” and “what happens next?”

All fair questions. What the hell does happen next?

Well for the next three weeks I continue to take it easy and carry on taking all my antibiotics and anti-virals, along with using excessive levels of anti-bacteria hand gel and drinking copious amounts of water.

I’ve explained before that Lemtrada is in the vast majority of cases, a two year treatment (if required they will give a third or even fourth round of  treatment). I spoke to Danny a couple of days ago and he told me that 10th July is the first date for beginning my monthly blood tests and urine samples. As part of the treatment, I need to undergo monthly blood tests from the start of treatment until four years after (so assuming I only need the two rounds, that’s 60 blood tests over the next five years. Absolutely open to countdown suggestions for this!)  I’ve been told under no uncertain terms that if I don’t stay on top of these, the second round of treatment next year will be withheld. It’s so important that I keep up with these as Lemtrada puts me at risk (in varying degrees) of thyroid problems, clotting issues and liver or kidney failure. None of these things scare me as with close monitoring all of them can be managed. I know it all seems a bit “give with one hand and take with the other” but in my eyes, they are risks I’m willing to take.

That’s pretty much it until next year then. Some NHS Trusts give you an MRI to monitor disease progression between Round 1 and 2 of treatment, but others do not. I’m not sure what to expect from Salford at the moment so watch this space for that one. Some don’t do it as even though there’s every chance I’ll have a relapse between now and this time next year, I need to remember that there’s a reason that this is a two-year treatment. So it might take 18 months from now before I get an indication, aside from how I start to feel in the next couple of months, about how successful it has been. I have an appointment with my Neurologist in September and another appointment early March with my Consultant so they’re keeping a close eye.

I recently read that someone who successfully went through Lemtrada in the original trials 15 years ago has active MS again. I’m not going to lie, it scared me. I’ve gone through all of this for that to happen? From a rational point of view however, I know that back then there wasn’t the multiple treatment options they have now. So how much more could be around in another 15? Dare I say it, possibly even a cure. She has been offered a third round though now by her Neurologist which is brilliant news for her, and for the MS community in general.

On top of that, you might have read about the recent breakthroughs in stem cell therapy and from what I understand through speaking to other people in my shoes, if Lemtrada is unsuccessful I’ll potentially be offered that on the NHS. So there are alternative options available to me although obviously I’d prefer this to work. 

In the meantime however, I’m just taking each day as it comes, enjoying that each day I’m achieving more again and just generally feeling a bit better all the time.

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