Yes, I know the title is melodramatic, but I thought it goes along well with the title of my last post. I sometimes am a nerd that way :-) But I’m afraid to say, it also is pretty accurate, even though I’m doing more or less fine at the moment. It’s a weird situation, really.
If you’ve been following my blog for a while you might remember some posts I wrote about my health issues in January. If you don’t, here now is the updated, detailed and loooooong story. It really is a long post, so if you’re in a hurry you might want to bookmark it and keep it for later. And I should put in a disclaimer for anyone finding this post via a google search: I’m not a medical expert and I don’t want to be hold responsible for any (correct or false) medical information I’m posting here.
In case you didn’t know it yet: I have Multiple Sclerosis. I have had it for over 10 years now and after the initial few months when I had to get to terms with this diagnosis I actually continued to live a rather normal life even with this disease.
MS is an autoimmune disease which for unknown reasons makes the T-cells attack the white matter in the brain, as if this white matter was a virus. The usual inflammatory process that goes along with this then causes damage to the white matter. The white matter is something like the communication centre of the brain, where the impulses from various parts of the brain are passed on to the nerves anywhere in the body. Depending on where and how severe the damage of the white matter is there are various neurological symptoms, which sometimes reserve themselves but if there is much damage over a longer time they won’t. [That is MS in a nutshell :-)]
Right after I got the diagnosis I started taking special medication (daily shots with a immunmodulation drug) to decrease the number of attacks and thus the damage to the white matter of my brain.
Over the last ten years I did have an attack at average every 18 months, but those attacks were not severe and hardly left any noticeable impairment. Whenever I had an MS attack I got IV of corticosteroids and suffered through their side-effects, but it was just a bother for two weeks at the most and I could continue leading my life as if nothing had happened. In the last two years I had attacks more frequently and the symptoms took longer to disappear or in some cases they did not disappear completely.
It all didn’t affect me me all that much, because a slightly reduced sensation in hands or feet is something you can easily get used to over time. I’ve met other patients who were doing so much worse so much sooner, so I felt rather lucky. If you disregard the fact that I have MS to begin with.
Because of the increased frequency of the attacks and the fact that some symptoms did not vanish completely any more, my neurologist decided to do a new MRI in January. The results of that: not so good. There was a lot more damage to the white matter as there was supposed to be after taking the medication I took for all these years. The mild attacks I experienced were actually just the tip of the iceberg. Even without any outward sign (i.e. an MS attack) the T-cells are still very much actively screwing my brain and causing havoc.
I might not notice yet in which parts of my brain the white matter is compromised to what degree, but it very likely might be noticeable sooner or later. I always explain it (to myself and anyone who wants to know) that my brain obviously manages to compensate the damage of the white matter to some degree, but one day there might not be enough healthy white matter left to fully compensate the compromised white matter. Which then might lead to permanent functional deficits of various kind.
To stop the inflammatory processes in my brain from progressing, my neurologist suggested to change from the basic MS medication to a more aggressive kind, as the medication I had taken so far obviously didn’t stop my MS from progressing. I had a really really hard time to come to terms with that new diagnosis and to make up my mind about this proposed new treatment, because it’s not without risks. Not to mention the possible side-effects any drug can cause.
During most of February my mind was busy with just thinking about all of this and trying to wrap my mind around it. All of a sudden I was forced to re-evaluate my state of health and my own perception of it all and that really messed with my head for a while. I had long ago accepted the general diagnosis and what came with it and that the MS would trouble me every once in a while. But to find out that this might all have been a false conclusion and that I’m not doing as fine as I think and feel I do, was frustrating and terrifying. I felt like I had been thrown back to 2000, when I had gotten the diagnosis MS and I had been forced to process it and think about what it would mean for me and my life. When I had spent so much time reading about this disease, searching the web for information, reading and writing on MS patient message boards, being a small part of the MS online community and all that.
I started doing that again after this new development, but just like back in 2000 I stopped after a few weeks, because it can also drag you down. The internet is a great place to gather all kind of information and it helps because you need to make a informed decision about a treatment that might change your life (one way or the other), but too much information can also be really depressing. I knew what could happen to me one way or the other, I didn’t need to read the personal life stories about those patients who were doing so much worse than me or for whom this new treatment worked out badly.
I spent quite some time wondering if I should have been more vigilant over the past years and should have paid more attention to even the slightest change in my neurological status. But fortunately those thoughts stopped soon enough as well. It wouldn’t have changed a thing and I’m not sure I would have agreed to this new treatment a few years ago, when it was just out of the testing stage, so to speak.
Of course I also spent a lot of sleepless nights (and waking hours) trying to decide what to do regarding this new treatment option. At one point in February I was almost sure that I would not agree to this treatment and was getting ready to accept that I most probably will end up impaired in some way sooner or later and was thinking about how I would prepare for that. But then the acute symptoms (loss of sensation in my palms and weakness in my fingers) did not vanish as soon as I had hoped and it started to make all kinds of everyday task (typing on the keyboard, tying my shoes, buttoning up my blouse) annoyingly difficult for a looooong time. It’s still troubling me now after months and I still drop my keys and other stuff more often than I’d like. The prospect of having to get used to that or to some even worse impairment sooner or later didn’t seem like an acceptable option any more.
Sometime in early March I decided to go for it and after that I was finally able to think about other things as well. Because this decision honestly occupied my mind and thoughts more or less constantly up to that point. I think I was a really bad employee during that time, not to mention that I neglected a lot of other activities too during these weeks.
Why was it so difficult to make that decision? Because besides the usual probable side-effects of any kind of medicine, there are two, well especially one downside to it.
This new wonder drug of mine is called Natalizumab (marketed under the brand name Tysabri). It has proven (as far as medical studies and 6 years of it being on the market can prove it) to really be the wonder drug to stop the MS from progressing. Tysabri basically shuts down the blood-brain-barrier for any T-cells, so the T-cells can’t attack and damage any white matter. So far, so good, it seems.
The downside is, that this closed blood-brain-barrier also means the T-cells can’t get into the brain to attack any other virus that might get into my brain. This is a problem regarding the JC virus which causes a rare but severe kind of brain disease, called PML. Untreated PML leads to death within a few months and even if treated there is a high chance of permanent neurological damage. Symptoms of a PML are similar to MS symptoms so it’s not always easy to recognize right away which might have caused the acute neurological deficits. So far the chances of getting a PML while being treated with Tysabri are low in the first year, about 1:1000 in the second year, followed by a higher risk later on, even though there might be lesser risk after year 6 or so, but this drug hasn’t really been on the market that long. Sooo… quite a choice to make, right?
A. Faster progression of the MS and risking to end up impaired rather sooner than later.
B. Risking to get PML and end up severely impaired or dead.
Why on earth do I want to take that risk and why did I decide to start the Tysabri treatment in May? Because after I’ve read all the information on the internet and talked to my neurologist and his MS-nurse and to the head of the neuro department at a large hospital and his MS-nurse, all of who are offering this treatment for over 4 years now, I trust them enough to monitor me and my state of health so closely that they would detect any sign of a PML soon enough, if this stupid JC virus ever decided to attack me. If a PML is caught early on there are ways to treat it and it might lead to some neurological damage after all but you can survive it. After considering all of this I decided for me that at the moment it is worth the risk.
Part of the whole monitoring process includes that I myself and my family and friends have to monitor my state of health more closely than before. Because even though PML and MS symptoms are similar, there also are differences. MS attacks in most cases start over night, while PML develops over a longer period of time. If I experience some symptoms I already experienced during a former MS attack it most likely is a new MS attack and not PML. PML often causes cognitive deficits, which are more rare with MS. Symptoms like forgetfulness, signs of dementia, change of behaviour. So if you ever catch me tweeting something like “Hey, Shonda, I think you are the greatest TV writer ever” please talk to me about it:-)
One of the many things on my long to-do-list for the Easter holidays is to take stock of my current physical and mental status to have something to compare it to after I will have started the Tysabri treatment. Like I mentioned earlier in this post it’s so easy to forget or to not notice tiny changes, because you are too busy with your life.
In the past I sometimes noticed a slight change like some tingling in one of my feet, but I couldn’t say when exactly it had started, because I didn’t pay close attention to all parts of my body all the time. It would have driven me crazy. Now though I have to pay closer attention to any changes and even though both doctors assured me that PML wouldn’t manifest itself with some slight tingling in my feet but with more severe and noticable changes, I’ll prefer to be safe instead of sorry.
Am I scared that this decision might turn out to be the wrong one? Am I scared to be one of the „one in thousand” to get this rare and serious disease? No, I’m not. At least not much and not at the moment. Not since I made up my mind and not since I know what symptoms and changes I have to look out for. I’ve read a lot about the whole issue and I think I’m very well informed by now and I think the steps my doctors and I will take to monitor my condition closely will prevent anything bad happen to me.
Of course I’ve also read a few of the stories of the Tysabri patients who got PML and as tragic as these stories are, in some cases I don’t understand why they hadn’t noticed the signs or talked to their doctors about it much earlier. Because with the information I have gathered for myself so far, some of these symptoms were so clearly a sign of something being very wrong. But I really don’t want to be judgemental, because I’m sure they all did the best they could at the time. But I also know that I at least I will continue to „instruct” my family and friends what to look out for.
Whether it’s progressing MS or PML, I just don’t want to end up impaired in any way or needing any kind of assistance to get through my days. I want to be able to do things on my own, when and how I want to do them. So I won’t let either one of these really shitty diseases take over my life as long as I can do anything to prevent it.
I most definitely will (have to) re-evaluate my decision in two years, because the higher risk after getting Tysabri for more than 24 months requires to consent to the treatment again. And who knows what the researchers will have come up by then. They are working on solutions and new drugs and better tests and all that. So maybe there will be a new and even better wonder drug in a couple of years.
After I’ve taken months to make up my mind and have been through some pretty dark times because of it, I honestly would be seriously pissed off if in a few months it turns out that my immune system can’t even stand Tysabri and will form antibodes against it. Yes, that also is known to happen and it would suck on so many levels, because of what I went through to get to the point where I agreed to start this treatment.
What more is there to tell? The details, maybe. Unlike the other MS medication which usually are self-administered shots (daily in my case), Tysabri is administered once every four weeks as IV. It takes about an hour, I have to stay at the practice for another hour for observation and that’s it. A few days before the IV I have to get some bloodwork done to make sure I don’t have any infection and my neurologist will also want to see me to check my neurological status. Until now that only happened every three months but with Tysabri there is a closer monitoring and that’s totally fine by me.
The first few IVs won’t be done at the practice though but at the MS clinic of a large hospital, because for the first few IV there also is the chance of allergic reaction or worst case scenario even an anaphylatic shock. And you really want emergency care and intensive care close by just in case.
I will get my first Tysabri IV on Friday, 13th May. And no, I’m not superstitious. I could have already started with it in April, but I’m on vacation for the first week in May and I didn’t want to risk having to cancel that due to any stupid complication or side effects of the first IV. I will keep you posted on how it will all work out for me. But in much shorter posts then, I promise.
If you have stayed with me through this unusual and maybe even insanely long post: Congratulations and Thank You :)
My name is Ana. I have just read your post and I can only say that I admire you so much. You are really an example. After reading your post I feel ashamed of sometimes complaining about stuff that I shouldn’t complain or be worried about things that aren’t important. I wish you the very best of luck with this new treatment. I hope everything works out for you. I wish you the very best from Spain.
Thanks for these kind words :)
Wow, scary! I think you’re doing a great job of weighing your options and making smart decisions. I’m going to think good thoughts for you. :)
Thanks. It took me a long time to make this decision and now that I did I feel likea weight has been lifted off my shoulders. Thinking good thoughts is highly appreciated regardless :)
This is not a simple choice, and you processed it well, and not took it lightly. Researching the internet I found out that many patients are getting better using Tysabri and the Pml complication rate is low, well at least according to the news releases.
I hope is going to work out for you and keep us posted.