@Ashory 

Last reply

Ashory

Treatment Options

I have recently been diagnosed with MS. First MS attack was probably 2007 at this time I had an MRI which revealed one lesion. I had a follow up MRI 6 months later which showed no changes so I was told nothing was wrong. Over the years I have has similar attacks with mainly loss of sensation in my legs. Over the past year or so they have been happening closer together and seem to be much worse in duration and intensity. I had an MRI in February which has revealed an extensive amount of lesions. My first appointment with my neurologist was 10/03/2016. At this appointment he said it was highly likely I had an MS and he would want to be very aggressive with the treatment as it appeared to be quite advanced. He does not feel as though it is necessary to complete a Lumbar Puncture as everything indicates MS to this point. He took a lot of blood, gave me a very intense course of steroids (1000mg of prednisolone for 3 days) and asked me to return on 21/04/2016 and I actually left this appointment quite upset. He confirmed it was MS. My JCV results had not come back so we could not discuss those but he really didn't cover anything. He didn't mention the type of MS but I am assuming RRMS. He did not mention if I had active lesions which you all seem to talk about... What's the difference? Does it matter that I don't know? My current symptoms are pain all over (nerve pain), it constantly feels like things are crawling on me, I have horrible fatigue, my legs are weak, tingly and numb and walking is really difficult, the headaches are horrible. He has pretty much said since the steroids did not work there is nothing I can do about any of this?!?! Is this really the case? He briefed me on several medications and once he had done that pretty much said none of these are any good for me because they aren't strong enough and I have the choice of Gilenya, Tysabri and Lemtrada. I have decided I don't want the Gilenya option. I started to ask questions about these options when he told me he had another patient and I would have to come back in three weeks. He seemed to be leaning to Tysabri but couldn't really tell me why. He did mention ONE other drug Ocrelizumab which has not been approved yet but is expected to be released in the coming months. He seemed to want me to be put on Tysabri and then possibly switch to this one but could not tell me anything about the new drug as the study has not been released yet so he can't discuss it. I'm now more confused then I have been and am concerned that I need "aggressive treatment" but that he is willing to continue pushing my appointments back and back. I am leaning to Lemtrada and it appears to have a period of 6 weeks once you DECIDE to have it before treatment can begin so even if I choose at my next appointment to have it that's 9 weeks before I can actually START treatment. Does anyone have any recommendations or ideas about these two drugs? How do you even decide something like this?
@Stumbler

Hi @ashory and welcome, I've read your story a couple of times and it seems that you have been done no favours by your Neurological team. It's a shame that they didn't monitor you, rather than assume the 2007 incident was isolated. And, Neurologists don't seem to understand the impact of giving us a diagnosis of MS. We're never given time or compassion. Your JCV status would be an important factor in determining the Disease Modifying Drug (DMD) for the future as this can increase the risk profile. You have to assume that you have RRMS as a DMD is being considered. DMDs aren't appropriate for progressive variants of MS. Active lesions are indicative of active inflammation on your Central Nervous System (CNS), which would be causing potential damage. Inactive lesions are scars from historical damage. Managing MS is all about preventing future damage, whilst managing the symptoms of past damage. Neurologists don't seem to understand our impatience to get some control by starting a DMD. Ocrelizumab is one for the future. Yes, it is being rushed through, but still won't be available anytime soon. So, Tysabri Vs Lemtrada? I think the consensus of opinion is that Lemtrada is "the closest thing to a cure, without calling it a cure". There are several accounts of Forum Members, who have undergone Lemtrada treatment, with mostly favourable outcomes. So, you need to do your research, so you can be active in the discussions with your neurologist. And, do what you can to expedite matters. I hope this covers most of the points in your post, but do feel free to pose any further questions. :wink:

@Ashory

I suppose my biggest concern with Lemtrada is am I committing, for a significant period of time, to a drug that may not work for me? You have the 5 days of treatment and then wait another year before the next. When am I supposed to have a follow up MRI to determine if this has had the desired effects? If it hasn't can I switch to another option before receiving the second dose or do I have to stay the course? I believe I read somewhere that the longer you wait to start Lemtrada the less effective it may be and that switching form Tysabri to Lemtrada can reduce the effectiveness. Is this the case or was I imagining it? I also can't really ignore the fact that it doesn't require remembering to take a pill daily or monthly visits to the hospital. I feel like Tysabri is more of a disruption to my life as a "normal" person being that I would need to take half a day off work once a month to have Tysabri infusions completed. My gut feeling was Lemtrada and I was ready to commit there and then in the office but my Neuro just didn't answer the questions I wanted answers to and I felt rushed. This was quite upsetting considering that for 15 minutes of my appointment he was on the phone as he was also on call that day. I have considered a new Neuro but this guy is supposed to be quite highly rated. He does specialise in MS and runs many of the trials here in Australia, he could just use a little work on his bedside manner. I understand this is quite serious but my way of coping is to joke about it and he almost scolds me for that. Maybe he was just having a bad day? My first appointment wasn't terrible.