@Ashory

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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

@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

@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.

Imbarca

@Imbarca

Goodness, you've had a difficult time. With regard to your current symptoms: steroids are used in MS to treat relapses. If symptoms are the result of inflammation from a relapse, they may improve when the inflammation subsides over time. Steroids can speed this process up. Relapse symptoms are caused by damage to the brain/spine so when the inflammation subsides, the underlying damage remains. Because your symptoms did not improve with steroids, your neurologist is assuming (probably correctly) that it is the underlying damage rather than inflammation that is causing them. Don't despair, though. There may be ways to improve them. Some symptoms, such as walking or balance difficulties, can respond well to rehabilitation physio. Others, such as neurogenic pain, can respond to medication. If you are lucky enough to find a highly effective treatment that works for you, it may even be possible for your body to repair a little of the damage or 'reroute' a particular function. That, however, will very much depend on individual factors like the location of damage and your personal 'cognitive reserve'. However, as you are aware, time is important here and I think you should put all your energy (and your neuro's) into choosing the right DMD for you. Rehabilitation/medication to sort out your symptoms can come later. Incidentally, since your current neurologist is an MS specialist with knowledge of new treatments and a will to use them, I'd stick with him for now. You said your first appointment was fine; since your second one was so soon after the first, I would wonder if he squeezed you in when he was supposed to be doing other things in order to get you onto treatment asap. You can always look for one with a better beside manner once you've got the treatment you want.

Imbarca

@Imbarca

With regard to treatment decisions: Ocreliuzumab looks good and is coming soon, but you're right to think that waiting for it without treatment would be a bad idea. More information can be found on Bart's blog here: http://multiple-sclerosis-research.blogspot.com/2015/10/clinicspeak-headline-ocrelizumab-results.html This is a rather technical but very useful site run by a UK neurologist and his team. Ocreliuzumab looks like it potentially could be great; the benefits of Lemtrada with a much better safety profile. Taking Tysabri whilst waiting for Ocreliuzumab could be a good plan. However, there's no guarantee that it would work out like that and you could be waiting a long time for it or find out you're not eligible for some reason etc. Given that, I think that you should just consider it as one of the pros of Tysabri (could switch to other med) and cons of Lemtrada (it seems doubtful that Ocreliuzumab would be offered after Lemtrada) . Neurologists often seem to prefer Tysabri. I think this is because they have more control over it. If Tysabri causes you problems, they can stop it and wash it out. But the effects of Lemtrada are permanent; yes your immune system will regrow but it takes time (up to 12 years before some types of cell repopulate!) and it will have a slightly different ratio of cells to before. No-one really knows what the true long term effects of this are, but it's likely to include heightened risk for certain cancers. As other posters have pointed out, though, we're quite far on from the initial clinical trials and, bar the known side effects (1/3 - 1/2 get thyroid issues, 1/100 get ITP, 1/300 get Goodpastures), there haven't been any dramatic effects. It's not clear whether you will be able to change to another med after Lemtrada. They consider it a total treatment; if you get further relapses after the first 2 doses, most people seem to be offered another dose rather than a different treatment. However, I have heard internet anecdote of a few that have. There's no easy choice here. The potential side effects of both Tysabri and Lemtrada are very serious and scary. But, you will be monitored whichever you pick and the side effects from untreated MS are almost certainly worse! Be realistic about what these treatments will do for you. For the majority,they slow down the disease considerably. For many people they stop it. For a few, the halting of the disease means their body can repair enough damage to reverse their symptoms. On the whole, Lemtrada seems more effective but it also carries more risk. It's good in some ways that you've got a little time to decide. Write down all your questions, look for answers on the internet. There's plenty of opinions on the different options, but ultimately, yours is the only one that matters!

Imbarca

@Imbarca

Looking at your second post, I think that you'd find it helpful to do a bit more research about how they think Lemtrada works. Essentially, it does all the work it's ever going to do in the week you take it. It effect puts a target on all you B and T cells for deletion. A week or so after treatment, Lemtrada is gone and so are your B and T cells. In that sense, it works for everyone. It's unclear to me why everyone has a second dose, but I know that reactivation of MS between doses 1 and 2 can happen but doesn't mean you've failed Lemtrada. This is from the Bart's blog: "Alemtuzumab is given as short courses on a yearly basis; daily for 5 days in the first year and then daily for 3 days in the second and subsequent years. Subsequent courses are only given if your MS has been shown to reactivate, i.e. you have relapses or develop new or enhancing lesions on MRI. The majority of MSers (two-thirds) only require 2 courses to go into long-term remission. A minority of MSers will require 3, 4 or very rarely 5 courses of alemtuzumab. Please note that reactivation of your MS after alemtuzumab does not mean that you have failed to respond to alemtuzumab it simply means you need another course, this is different to maintenance therapies (give continuously) were disease reactivation is an indication of non or suboptimal response." With regards to effectiveness; the longer you wait to start any MS drug, the less effective it will be. MS has two drivers, inflammation, which causes relapses, and neurodegeneration, which drives progression. DMDs stop the inflammation. To start with, the inflammation seems to drive the neurodegeneration. But as the disease advances, the neurodegeneration seems to carry on irrespective of inflammation so DMDs don't work as well/at all. Those who have stopped all inflammatory activity very early in the disease with a highly effective DMD like those on the Lemtrada trials might well have stopped all progression - they are an ongoing experiment. Whether Lemtrada can stop progression in folks like me where it's already begun, is unknown. There's anecdotal evidence for positive and negative outcomes but not much data. Personally, I imagine my walking will probably continue to slowly decline, but I continue to hope for the best and I know that I've done the best I can by taking a highly effective therapy to preserve sysneed like arm function, speech and swallowing that I have no symptoms in. Also, whilst Lemtrada does not involve monthly trips to hospital, it is disruptive. I've just finished my first treatment and had 7 weeks off work. Many people recover quicker than me, but some take longer. I'll also need monthly blood tests for 5 years at least. I don't care about any of this - but you might!

Fi1909

@Fi1909

Hello and welcome ashory. My experience of consultants is that they are either eccentric or borderline rude . Always amazes me that vets have better people skills than human doctors ? stumblr is the guru on here so no need for me to add to his information. Not sure where in the world you are - if in the UK you have the right to see the consultant of your choice within the NHS. Wherever you may be , go to one who whether they great people skills or not - has expertise in MS. In terms of treatment I have elected for Lemtrada as my first dmd - first course will be on the 6th June . For me it was all about hitting it hard -I want my MS punch drunk and on the ropes asap X

CheshireCat

@CheshireCat

Hi @Ashory and welcome. I'm also a newbie only posted once but I'm in this path for a while - diagnosed in 2014, but had it at least ten years before that DX. I'm glad you found this place cause people here are simply awesome. About your post, I read it and... had to read it again... and again. In every reading I confirmed the first impression: I don't understand the way your Neurologist is dealing with you. It sounds like you're having a hard time and not much help, if any, from his side. My situation (with Neurologist) is not much better, and I decided to find another one, I'll get an MS specialist. I hope you'll do the same. An MS DX is forever. We have to know as much as possible about what type of MS we have, as well as what treatment our Neurologist thinks will be the best, and why. Things have to be done as quickly as possible and as effective as possible, to avoid further damage. Make your own research as well and read other people's posts here, you'll find quite a lot of different situations and medical approaches. You can take notes of things you want to ask, or even suggest to a good and reliable Neurologist. Make a list. I mean - prepare yourself for a good medical appointment. That's all I can tell you by now. Wish I could bring the MS panacea to spread around cause this condition sucks! Take care xx

Ashory

@Ashory

Just want to take a moment to thank everyone who has given me advice here!! It's truly appreciated. I have jumped up and down and had my original neuros nurse call and apologise for how terribly my last appointment went. They have pushed my next appointment to this coming Thursday to go over everything properly and to give me the time and information I need. I have also scheduled an appointment to get a second opinion from another highly regarded MS specialist here in Sydney on 13/05/16. Hopefully this will all result in me actually starting treatment!

Imbarca

@Imbarca

Hurrah! Well done @ashory. Standing up for yourself and taking control of your treatment options is really important and will help to keep you sane through this. Now, keep a pen and paper handy and make sure you write down any questions or worries that pop into your head between then and now. If you can, it's worth organising them into topics ie diagnosis, Lemtrada, Tysabri, symptoms etc the night before. Do 1 topic per page, leave room under each question or issue and then take it in and write down what they say. This has the double bonus of making sure you remember and making them pay attention. You could even use it with your second opinion neurologist and see if they give the same answers.... Good luck.