It's now a little over three months since I had my first course (5x) of Lemtrada (alemtuzumab) infusions, luckily none of the possible nasty side effects have reared their ugly heads, whew! I'm happy with that, though some of the side effects can show up years later from memory, at least I haven't been someone who had immediate problems tolerating this infusion treatment, so far in my life I have been lucky in that I seem to tolerate drugs quite well, though I've never been under a general anaesthetic so I have no idea how I'd go with that...please don't assume I'm gloating, it's a thought that definitely runs through my mind occasionally because I get a "monitoring" blood test every month and then you wait for the "all clear", from the phone app or email they deliver, just a tad nervously lol.
The list of possible Lemtrada side effects you read about and are made well aware of before you decide to do the infusions are not just minor afflictions, they can be quite serious. I won't list the possible side effects here, I will just link to a FDA pdf and you can read them there, I'll put the whole link so you can see it's on the FDA website, click the link below. Like any drug though, every possible side effect has to be listed, though hopefully because of all the trials and testing they do on Humans before bringing the drug to market, the side effects should be minimal in occurrence, hopefully... I'd rather link to an official source, rather than get them wrong and scare people even more than they already might be and I've listed some of them before in previous posts...
The Nurses and Neurologists should give you some official literature from the drug company that markets/makes the drug as well, so stick to those rather than blogs, then you'll have the official list of Symptoms! Then by all means go read everything you can on the web, in blogs if that pleases you, but check with your Neurologist if you have any questions, don't be silent, we're not all the same, some people seem to get side effects from every drug they take and with a personal "one off" side effect that some one might have experienced, it could be just that, a "one off" that has nothing to do with Lemtrada as such. We are told to report any problems we have to our medicos, so they can keep an eye on things and no doubt the Neurologists document everything and provide feed back to the drug company, well that's my guess anyway.
Official Lemtrada Home Page
Now back to my post infusion three month experience, everything seems to be fine, in fact I'm feeling quite well overall so I don't think Lemtrada has had any negative effects on my health, of course I really can't say it's had any positive effects either, well nothing noticeable anyway. When I was in the early stages of the pre treatment stage I did ask lots of questions and did read quite a bit about the drug and people's experiences. I would then ask the Nurse's or Neuro's for the "right" answer of claims that were made etc. or if they heard of anyone experiencing this or that, yes I am one who does ask a lot of questions when I am not clear on something.
I've written before that there might be some favourable "maybes" about possible positive Lemtrada effects, but they are just "my feelings" they are not scientifically tested, you can read back through my blogs about "what I think" if you like, but there has been no amazing benefits that I feel have occurred. I just hope I don't have another exacerbation, or they find any more lesions on the brain in the future, if I have no more problems, hopefully that means Lemtrada is doing its job, well that's the plan anyway ;)
I remember asking the main Nurse who was looking after me (I still annoy her with the odd question lol) if they had heard any possible benefits from any of the Lemtrada infusion recipients under their care. She told me no, nothing that they can prove, but she did say that some of us Lemtradians, some call us Lemmies (that's too close to "lemmings" for my liking lol) did find a greater sense of confidence, I asked "how so" she explained that a few have had a greater sense of confidence and have taken to improving their overall health and well being, for instance eating better, exercising and well, just living their lives.
I myself am doing exactly that now as well, so I understand where the other Lemtradian's are coming from. Maybe we're doing this because of the drug's possible side effects, being the healthiest you can be has to help if the "side effect shit hits the fan" surely, or the cost of the drug is huge and we appreciate that we get it for free in Australia's public health system or maybe not having to take some other form of drug regularly gives us time to consider our futures, who knows, but it is interesting nonetheless.
So in closing and in summary, all is well three months after my first set of Lemtrada infusions, I hope it stays that way, I will definitely write a blog post about it if things go pear shaped, oh one more thing, yeah the monthly blood tests are a pain in the arse, but eh, far better for them to be "on top" of any problems quickly rather than later when it's too late to treat the problem. I know people want to hear wonderful life changing news, but I'm just telling it how it is for me, honestly and without the bullshit or possible placebo effects that one may experience, I am feeling better, but I honestly suspect that is from the diet and exercising I have undertaken lately and am still doing, from my own personal experience if someone asked me if I think they should have Lemtrada as a treatment, I would say, Go for it! ;)
Link to all of my Lemtrada tagged Blog posts