All clear 1 year in! Stem Cell & Lemtrada

Freshwater Beach, Sydney

Freshwater Beach, Sydney

I had an appointment with my neuro this morning and got the results of my 1 year MRI since diagnosis - all clear! no new lesions, which is really great news and such a reflief. Everything I'm doing must be working which is reassuring, but also as I'm only one year down on OMS and it takes 5 years to stabilise the illness on the OMS program. So I think Tysabri must be doing a pretty good job. Every time I go to my neuro he says "if it was 10 years ago he doesn't know where I'd be", it's a chilling thought to be honest. As much as i've been misfortunate with this diagnosis, the whole thing has been a very real case of being in the right place at the right time.

In terms of symptoms, my eyes still bounce around quite a bit, I still get fatigue, a little nausea here and there but nothing major and all quite manageable considering where I've come from. I also have some numbness in my hands and legs but this is ever so slightly lifting every month. Hopefully it'll be one of those things I notice all of a sudden one day - that I have full sense of touch in those areas again.

But today I had one burning question to ask him about...

Stem Cell

As someone on Tysabri I know I can't be on this drug forever. Also I know if I ever test JC+ I would want to come off it and have an option up my sleeve. Because of the terrifying and deadly effects of PML. So I've been thinking about stem cell alot. And the recent studies that have come out are making it look curative.

I wanted to know if it was realistic to think that stem cell will be a cure in the next few years for me. And it was a resounding no. He said for me, my MS is too aggressive and I'd need a much heavier dose of chemo then what they're currently do at St Vincents. He is currently doing stem cell with some patients but the chemo dose wouldn't be enough for me. Stem cell treatment would also render me infertile, due to the chemo, which isn't ideal. He said (instead) he'd like to transition me to Lemtrada this time next year. He gave me an information booklet. This drug comes with some serious risks - but hey i'm on Tysabri already, potentially the most risky. No drug is a free pass i'm learning. However you are very carefully monitored for up to 5 years after treatment. The 1st treatment is once a day for 5 days, then a year later once a day for 3 days. Then thats it, however like I say, you are closely monitored with monthly blood work and urology for 5 years after. Sometimes people need more medication at that point and sometimes people don't. Its pretty incredible to think there would be no more monthly infusions, no more feeling like your another healthcare statistic on medicare. You could mentally leave the system, potentially - thats quite appealing. Not to mention working those monthly visits into and around your life forever.

After a quick google search I found the blog of a lady who is taking Lemtrada and documenting everything, her blog is such a fantastic resource. She's having a slow and steady recovery because Lemtrada works on your immune system. It's not "holding the badies back from your brain" like Tysabri. Its actually positively impacting your MS and she's regained energy, mobility and more and continues to improve. She has what she likes to call "Lem friends"some friends she's met on Lemtrada, one that has absolutely nothing evident on his brain at all, and no symptoms, that sounds like the ideal recovery almost curative. However others like her, are slow and steady in their recovery. Also like my neuro says some will need more meds in the 5 years, because these things all effect us differently.

And one major bonus - it's apparently baby friendly. The Lemtrada is out of your system after 30 days but the effects last long term. So I'll continue to read-up on this drug but I'm so relieved that there is drug I can go on after Tysabri.