how does one judge treatment failure?

[DizzyDean]

Hello all - long time lurker, sometimes poster here, its been awhile.

I had on/off symptoms of ON, Lhermitte's for many years (early to mid 1990s I had episodes of both, but neither led to an MS Dx). I had Xrays, etc. and ON was written off as a virus-fluke, Lhermitte's as a neck disc issue. I was finally Dx'd RRMS in 2003 when I had my first definite "full body" relapse which finally led to my first brain/spinal MRI series.

Initially I took a gamble, and tried to avoid the CRAB drugs. I went with LDN and reduced fat diet (and lotsa vitamins) 2003/2004 to ~2007 and had another relapse and another MRI. In about 2007 my neuro judged this to be treatment failure - LDN and swank diet/vitamins alone were insufficient to control my disease.

Finally in 2007 I went onto copaxone, 2007-2010 as a daily therapy and in 2010 my neuro moved me to taking the standard 20 mg, but every other day (he does this with many of his C patients if they achieve stability for several years). I dropped LDN in about 2008 or 2009 with no changes that I could tell. Kinda dropped swank too. Stayed on the vitamins though (daily multi, C, D, B12, fish oils, calcium/magnesium, CoQ10/alpha lipoic acid).

During the last 4 years I've done very well. A few nasty bruises and IPIRs from copaxone, but no lipoatrophy (males don't seem to get this as much as females). Some injection site lumps that stayed around, but nothing serious enough to stop copaxone treatment.

Over the last 4 years I actually got back to my younger youth days of physical fitness - running several times a week (up to and including 1/2 marathon distances). I also lift weights, do martial arts, and continue to work full time. I am a husband and a Dad. I really have had only minimal residual disability, some color deficit in the ON eye and some Lhermitte's. Very low EDSS, 1.0 worst case.

But, my world changed about 3 weeks ago I began an episode of ON, in the same eye that previously suffered ON in 1991 and again in 2005. The current episode of ON is fairly mild compared to the prior 2 (no flashes of light and only minimal pain this time), ophthalmologist tested that eye at 20/30 acuity, but has greatly affected my red/orange color vision and especially degrades my vision in bright light (afferent pupil defect, the ON eye doesn't constrict/dilate as it should). And I get heat sensitivity after heavy exercise like running, which I had many years ago on prior ON attacks but was long since resolved.

The ON is slowly resolving @ 3 weeks into it, and my vision seems to be recovering to baseline. In fact, barring heavy physical activity it seems pretty much back to normal. I had a followup brain MRI taken last week. The most recent to compare it with would be from 2008 (one year into copaxone after a year of "every day" 20 mg administration).

My overall questions are -

* how does one define treatment failure? My gut (and neuro) have always agreed that I have had a fairly mild disease course ... Until 3 weeks ago I have made it through 20 years from first symptoms and 8 years from formal Dx with very minor residual symptoms - only a bit of residual color deficit in the ON eye and occasional Lhermitte's sign, e.g. EDSS of maybe 1. But what amount of lesion growth in the last 3 years would tell us that we're seeing treatment failure, as opposed to a "more benign" case of re-inflammation of an old lesion site?

* obviously I have to get my neuro's input, but if treatment failure is deemed to have occurred - choices are probably likely to be going back to copaxone every day or moving to one of the newer drugs tysabri/gilyena. To me, the efficacy stats on ABR just don't seem compelling enough to try that next if copaxone isn't deemed sufficient for me. But these newer drugs seem to come with far harsher (and less fully characterized) side effect profiles. Not to mention uncertain cost reimbursement.

* copaxone doesn't claim to eliminate all relapses, how do I determine if this was a case of treatment failure - e.g. breakthough "new" disease, or simply "I was due". I don't have last week's MRI results yet.

Any thoughts? I'm sorry for such a long post, but I'm trying really hard to hang on to my so-far-pretty-dang-good physical condition, ability to keep doing running and martial arts at a competitive level, work full time, continue being an effective husband/parent, etc. I'm not a "typical" MS patient, but then again I guess nobody is.

I appreciate any input. This is an excellent board. Some VERY intelligent and well-read people here, many who have studied this disease and its therapies far more than most patients and frankly, many doctors.

[Wonderfulworld]

Hi DizzyDean
it does not sound to me as if you are having a treatment failure. To be at your level of fitness, work fulltime and be a Dad.......woah! I am a Mum, no longer working fulltime due to MS-fatigue and I am still fairly physically fit as I try to keep up the gym, pilates and walking regularly, so I understand the driven-ness a little!

The impression I get is that you get more frequent MRI's to monitor your progress in the US. In Ireland neuros just do not do this - because lesion load tells you nothing about disability or progression, so they just don't think it is worth running MRIs.

My gut feeling is that if you have regained fitness to the level you're at now, and have done so, so well for the last 4 years then yes, Copaxone is working very well for you. Given that you don't have any other side effects and seem to be saying you've been relapse-free for 4 years then all the more so. I have never read anything to tell you what relapses are ones that you would have suffered despite the Copaxone but in a lesser way, or are a disimprovement of your MS that would necessitate changing drug. I think the neuros weigh everything up - your pre-dx state, your state since dx, the kind of relapses you have, are you worsening, maybe your MRI status, your tolerance of the drug, and how much risk you are willing to expose yourself to. Like much of MS there is much grey and little black and white.

I hope your ON keeps improving - that's really positive that it is lifting already for you- and you're back to yourself again asap.
HTH

[Jimpsull]

This is a tough question -we don't know what is and isn't helping and how much. I encourage you to add swank diet back to your regimen (in addition to copaxone). CRAB drugs show reduction in relapse rates but none of them come close to approaching Swank diets 34 year impact on disease progression.

We have to be careful that the cure isn't worse than the disease. This is why I switched from Tecfidera back to copaxone.

I told my son MS may have saved my life. High blood pressure and 60 pounds are both gone as a result of 4 years on the Swank diet.