How To Monitor Disease Progression

[JaneK1975]

Hi folks. Hugs and best wishes to all. My 6-month follow up appointment with my neuro is around the corner and I’ve been thinking about how to prepare for it. Since my symptoms are pretty livable right now and I’m new to Copaxone, my main concern is to work with my neuro to develop a long-term plan for monitoring disease progression. I think this is important because I want to be able to make informed decisions over the years to come when/if I have another flare.

At my diagnosis appoitnment, my neuro told me he wanted to see me 6-months from the date I started Copaxone. He said at that time that he would have me get an MRI and we would go over the results.  When he told me that, I thought 6 months might be a little early to have another MRI, but knowing that Copaxone takes 6-9 months to start working, I figured it would be nice to have some type of baseline as to how my MS was progressing before the Copaxone took effect, so I was happy with the plan.

I called his office last week to start scheduling things, and his nurse told me that his notes state that my 6-month appoitnment will be for a clinical eval, and at that time he will decide whether or not to schedule me for an MRI, depending on the results. She double-checked with him, and that is now the plan (I’m not sure why it changed). I don’t know how to feel about this because I’m not sure what I want. At my appointment, I plan to have a discussion with him about how to monitor my MS over the long-term, but going into it I would like to have some idea of what I consider my ideal for MRI’s so that he and I can work together to develop a final plan and we can be on the same page.

As far as clinical presentation goes, I think in the months following my diagnosis I’ve been able to put together a good timeline for frequency of relapse. In hindsight, I can identify 4 relapses including my diagnosis relapse (2005, 2008, and 2010, and 2011). I will arrive at my appoitnment with this info in hand (including brief descriptions of my relapses) so that we can take this info into consideration.  I know this the clinical info is just as important (if not moreso) than any info we can gather from MRI.

I would love to hear people’s thoughts on frequency of MRI following diagnosis and beginning a DMD. I know there are a TON of variables and every case is individual, but I would love to hear any insight you may have. Thanks in advance for your time.

Best,
Jane  

[bubbles_04]

Jane: Hahaha I don't think you are Mundane or long-winded :)

All: I guess I'm kinda new to this so its hard to judge what I think is best. I do agree that what you feel is very important, so clinical evidence must be weighed higher than MRI evidence. However I do wonder about damage that might be happening that we do not have clinical features for. I guess the thought behind that would be, who cares? right? if its not affecting you then its not important. However, I do worry about the unknown damage, I mean I have 9+ lesions in my brain and 5 in my spinal cord. I have had 3 relapses and just worry the numbers don't add up. I see what you mean though jane with the spinal cord, it was prob the 3 bigger ones that caused the 2 numbness attacks.


Anyway, I totally agree with you all, I think clinical is most important with MRI secondary but I would still want an MRI once a year.

[JaneK1975]

Bubbles: Just wanted to share that I just read in a study that spinal MRI's are not considered likely to be useful for monitoring disease activity because lesions are less visible there and tend to correlate much more with clinical activity. I think those docs that do use MRI to monitor disease activity between flares use brain MRI's only. I'm not saying that's a final truth, just something I read in one scientific article...

[JaneK1975]

This is getting so interesting I had to stay in for my lunch break.

Kat: I track daily, but my symptoms have been very constant for a few weeks now (other than slight worsening when I'm overheated). I think is excellent news for me and tells me that I am not experiencing anything close to a flare recently, and I'm healing quite well from my last flare. To answer your questions: Yes, in hindsight I see that my flares have become more frequent and more severe since my first identifiable flare in 2005. My last flare left me with symptoms that remain to this day (being constant for over 7 months now). Judging from my history I anticipate that I will have another flare some day unless I'm one of the lucky few who respond really well to Copaxone (fingers crossed). I'm honestly not afraid of another flare, but I'd like to be a good little MSer and avoid any potential permanent disability if possible.

Kyle: I agree wholeheartedly that clinical evidence is the main factor in determining response to a DMD. In fact, I think it is the entire point of monitoring response to DMD, because the end game is to reduce the frequency and severity of clinical attacks. I don't like seeing lesions on my MRI, but I'm not taking Copaxone to avoid them, I'm taking Copaxone to avoid losing function someday. On the other side of the coin, there is scientific research out there pointing to the idea that MRI data can be used to support decisions regarding DMD's, and from what I'm reading it is a fairly common practice. Personally, I believe that clinical data and MRI data can be used in conjunction to make informed decisions. I'm open to hearing what my neurologist believes with respect to this question.

I guess what I'm trying to get a handle on in my head is what my individual plan for monitoring my MS will be over the next 5-15 years. I think from a general perspective, this is an area that is still being researched and there is no single best answer. I'm glad I have an idea now of my underlying beliefs about using clinical and MRI data in conjunction, because now I feel prepared to have a somewhat intelligent discussion with my neuro about it. This feels a bit like choosing a DMD - there are several valid options.

Okay, I'm done agonizing over this ;)

Hugs,
Mundane (and apparently long-winded) Jane

[Sidesteps]

Hiya's guys, like most others, I do have an opinion on this. he he~

I am on a 1 year MRI setting. I honestly do not see a purpose in it other than to verify what I already know is happening in my body. There are FAR too many people who have lesions that go missed or are too small to detect.

Plus, DMD's only reduce about 30% of the flares; so in my opinion MRI's are used only to verify the current symptoms and make sure that something else isn't going on inside my CNS (cancer or another disease.) It seems that

I am having a flare about every three months. If I have more than 3 a year, I am not where they want me to be and we need to switch medications. I would prefer to document my history and use that instead of have MRI's.

[kwarendorf]

It seems to me that the appearance of lesions on MRI studies are a lagging indicator. How many people have symptoms before anything shows up on MRI's?  The abstract from the Lancet article says there are no imaging markers. Therefore I'm not sure what predictive value they have.

Clinical manifestations are more of a leading indicator. When my gait starts to get weird I know the games afoot. This would likely be verified in pictures taken after the fact.

When it comes to DMD selection, if there is nothing showing up on MRI's then can it be assumed that your DMD is working? If it's not working then its failings are more likely to show up clinically before the can be seen in pictures.

Just one man's opinion (or in this case maybe two)

Al

[bubbles_04]

Hey Jane!

This is such a great thread, it really got me thinking about stuff. I agree with you, I would like an MRI once a year of my brain and ideally my cervical and throatic spinal cord too. After all I have 5 lesions there and the spinal cord ones are normally the real trouble makers. Maybe thats greedy of me though :)

I think keeping track of your symptoms is def key and just as or even more important than the MRI. MRI can't pick up baby lesions but if the location is right you'll know about it!! It was very interesting to see the years you had your relapses. Do you think your relapses got worse each time? They did get closer together..... I found that very interesting. I love this idea of the excel sheet!! What do you guys write in this excel sheet?? Do you write in it daily?? I think I will start something like that!

Thanks Jane for always asking the right question and thinking so deeply about these problems we all face. It really helps get me thinking too :)

Kat x

[JaneK1975]

Thank you guys so much for your thoughtful responses. This has really helped me clarify my thoughts.

JJ: Thank you. I believe the study your talking about is one of the studies referenced in the article I mentioned above. It is probably the most "on-target" study to date regarding efficacy of MRI's in monitoring progression. Thanks for offering the article, but I'm think I'm okay now having talked things through.

Alex: Hugs. I agree that tracking symptoms is the most valuable tool we have in monitoring disease progression. I have an Excel spreadsheet as well, and it's pretty enlightening. Thank you for your encouragement. Words fail to express how much it means to me.

Lulu: Thank you for asking your question. I have identified a couple potentials, but I haven't made any calls yet since I do not move until sometime in August and won't be able to get to an appointment until September. BUT, it just occurred to me that there is no reason I can't start making calls now to schedule an appointment a few months in advance. Once again, you have given me just the push I needed!

You guys are the best,
Jane

[Lulu54]

Hi Jane, I 'm wondering if you have identified a new neuro yet in your new town - you have such good questions and those all need to be discussed with the new doc.

Monitoring the effectiveness of those DMDs is really key - at least in my mind.  But the common MRI machines  - as configured and programmed right now - only catch part of the story.  

Good for you being proactive , that is important, too.
best, L

[tingletingle]

Hey you clever little manual injector,

Just popped by to say hi.

I think this is an excellent question. For me I am really keen to record my symptoms, which I had previously captured on the medhelp symptom tracker, but now just on excel spreadsheet of my symptoms. I can never remember how I am feeling from week to week and the symptoms aren't anything that the neuro is going to be able to prove.

I can talk about my numbness and tingling till the cows come home but unless I am having a bad day and start limping he can't possibly tell.

So, I would recommend keeping a symptom tracker of sorts. It will be more valuable to you I suspect but at least it will enable you to answer the neuros questions with some accuracy.

For example, how are you feeling today? I could answer: good, really good compared to two weeks ago. My tingling in left arm and right hand is gone again, my cognitive issues are resolved, I only have slight MS hug today and the numbness and tingling is only from calf to toes today. To which he would reply: well that Copaxone is really doing it's job isn't it!. To which I would reply: yes, plus the diet, exercise and mediation too.

Blessings
Alex

[supermum_ms]

Hi, I just thought of something i read, i read just about every research based info that comes out, so off the top of my head i can't remember exactly which one but if you want i'll try to hunt it down for you, just let me know.

Anyhoo, it was about the effectivity of MRI's to monitor progression, people on DMD's were expected to have upto 3 new lesions per year and none DMD MSers 6+. The jist of it was that the MRI was not as effective as the clinical findings because the MRI doesn't tell the full story but the decline or status of the individual did.

Good luck on which way you deside, its not an easy one to make.

Cheers.........JJ

[JaneK1975]

I'm so long-winded today. Sorry, guys :/

[JaneK1975]

Thanks for sharing your experience, Alex ;) I’m not feeling a need to get an MRI at 6 months, but over the long haul, I do believe that MRI data can provide valuable information that clinical evaluations cannot. I guess what I’m really trying to nail down here is what kind of balance do I want between using clinical data and using MRI data to monitor my disease progression over the next 5-15 years. My ultimate goal is to limit potential disability over my lifetime, and from the scientific research I’ve seen, disease activity and brain atrophy (the things that eventually lead to disability) can be mainly subclinical during the early stages of MS.

Ultimately, monitoring disease progression is only useful to make informed decisions about DMD’s, and that’s what I’m looking towards. I wouldn’t anticipate that any single MRI result would lead me to change DMD (nor any clinical event, for that matter), but I do think I should try to form an opinion about the frequency of MRI I am hoping for so that I can monitor changes over time. At the moment, I know it’s somewhere in between “only get an MRI when you have a flare” and “get an MRI every 6-months or year”. I think I’m leaning towards requesting an MRI 1-year from my diagnosis MRI, then asking for one every three to five years, or when I have a flare (whichever comes first). I’m looking forward to hearing what my neuro's plan is.

I found an interesting article from The Lancet Neurology journal published in 2009 by some docs out of the Cleveland Clinic. It looks like the most recent scientific journal on this subject. Here’s the abstract if anyone else is interested:

"Current approaches to the identification and management of breakthrough disease in patients with multiple sclerosis"
Rudick RA, Polman CH.
Mellen Center for Multiple Sclerosis Treatment and Research, Neurological Institute, Cleveland Clinic, Cleveland, OH 44195, USA.

Abstract
Disease-modifying drugs (DMDs) for relapsing-remitting multiple sclerosis (RRMS) are only partly effective -- breakthrough disease commonly occurs despite treatment. Breakthrough disease is predictive of continued disease activity and a poor prognosis. Availability of several DMDs offers the possibility of tailoring treatment to individual patients with RRMS and altering treatment in patients with breakthrough disease. However, no biological or imaging markers have been validated to guide initial treatment, markers of individual responsiveness to DMDs are scarce, and there is no class 1 evidence to guide alternative therapy in patients with breakthrough disease. In this Review, we discuss proposed strategies to monitor patients with RRMS being treated with DMDs, outline approaches to identifying therapeutic response in individual patients, review MRI and biological markers of treatment response, and summarise the role of antibodies in biological therapies. We also outline possible strategies for the management of patients with breakthrough disease and highlight areas in which research is needed.

[kwarendorf]

Hi Jane- I recently had my 6 month (or so) following dx visit. I did have a new set of MRI's done, but there are a couple of differences between you and I, beyond the whole XX v. XY thing.

I am on Tysabri and I think they use MRI to check for PML, which is not an issue with Copaxone. The other difference is that my neuro just finished installing 2 3T MRI machines of his very own. I think he wanted to play with them :-)

It seems to me that having been diagnosed clinical evaluation will be the best monitor of disease progress. I know what I felt like when I was diagnosed and I know what changes I have experienced since. MRI's might confirm clinical changes but they won't really provide new information. I know I have MS :-)