Here we go again. :)

[Hopeful2015]

Hi, ThisIsMS. I came here after getting myself kicked off of msworld.org for posting honest personal opinions which that site's moderators took exception to because my opinions were unpopular. I did not insult anyone or deliberately provoke anyone. They sent me warning emails telling me that I was out of line for sharing my opinions on a discussion forum. I invited them to exercise their option as administrators to suspend my account and they did. Heh. Oopsie. As long as I don't insult anyone or deliberately provoke people, am I allowed to include my opinion in discussions on this forum even if it is not warm and fuzzy?

Diagnosed with RRMS in January 2000
Therapies I've been on: Avonex, Tysabri, Gilenya in that order.

Had to discontinue Avonex because it lost effectiveness;
Had to discontinue Tysabri because of PML risk from positive JCV virus levels;
Was advised to discontinue Gilenya by my neurologist because of continuing disease activity while on it, and personal discomfort caused by lung congestion originating out of Gilenya use.

Per neurologist, I am first on list to begin Lemtrada as soon as hospital has treatment protocols established and insurance approves payment, anticipated in late February. I and one other patient are to be the first in his practice to receive Lemtrada.

Kind of anxious.

Thanks in advance,
Hopeful2015

[NHE]

Welcome to ThisIsMS. I have no experience with Lemtrada. Have you taken a look at the Campath forum? http://www.thisisms.com/forum/campath-f12/

[Hopeful2015]

Indeed I did, NHE. Excellent suggestion. And can you tell me what you know about any composition differences there may be between Campath and Lemtrada? My neuro enthused about how effective Lemtrada is supposed to be for many people, and while he did not sugarcoat the side effects from the infusion process when he broached the topic to me, at my last appointment he went into greater detail. He said that the side effects of Lemtrada manifest in 80% of those receiving it, and told me to plan on having someone to drive me to and from my infusion appointments all week. Further, he told me to expect the week to be a "waste," as in, I would be physically demolished. Yikes. I was under the assumption that Lemtrada is a diluted version of Campath. Is this incorrect? Are they the same strength? Is the dosage of Lemtrada for MS patients less in strength and/or duration than a similar treatment regimen for a cancer patient on Campath would be?

Thanks in advance for your thoughts, I appreciate the feedback.



PS. Nice Orca.

[jimmylegs]

hi, hopeful

FYI here's some info re the TiMS playing field:
http://www.thisisms.com/forum/general-d ... pic39.html
and
http://www.thisisms.com/forum/post146864.html#p146864

all very common sense, hope that helps!

[ElliotB]

I think it is a good idea to take medication. I have been on Copaxone since I was diagnosed almost two years ago but don't rely on it - there does not seem to be conclusive evidence that available meds even really work and tit appears they do not stop progression of the illness. I certainly hope that they do work in some way. I think it is important to do as much as possible for personal health with regards to diet, exercise, nutritional supplements and lifestyle. Although not everyone seems to agree that changes in these areas help either. How are you taking care of yourself in these areas?

[Hopeful2015]

Eliot,
My experience with the meds indicates that DMDs DO work. Cause = Effect. When I was on meds my relapses were controlled. When I was off meds, they came and went as they pleased. The other variables you cite that might come into play, such as diet and exercise, did not vary from one period of time to another and were a constant, so I do not consider them relevant from a control standpoint.

That said, yes, it certainly can't hurt to maintain fitness and nutrition. We still have to stay healthy to avoid conditions that directly relate to inadequacies in lifestyle.

[ElliotB]

My personal experience with the meds is like yours - that DMDs DO work as well. I am just not relying solely on the one I take. And it is well known that DMDs do not necessarily alter the course/progression of MS. I strongly believe that exercise is critical for good health, especially for those with MS (I spend usually 3 hours or more per day doing some form of exercise) and am a firm believer that diet affects our health as well.

[Hopeful2015]

Eliot,

Thank you for your response. You raise an interesting question: Does relapse activity correlate to disease progression?

My neurologists take on this seems to be yes, it does. In other words, he believes that the more relapses you suffer, the more damage you incur. I take that to mean the DMDs DO alter the course/progression of MS if they reduce/prevent relapses. Otherwise, why take them? They do not alleviate symptoms of relapses, so to accept the side effects of MS meds would seem to be a pointless exercise otherwise.

If you are being absolutely literal in the interpretation of the data, I guess you could say it is not proven they prevent relapses- because how do you prove a negative? Unless you can prove a relapse would have taken place without the drug, you can't prove the drug worked.

[ElliotB]

"Does relapse activity correlate to disease progression?"

I don't think anybody knows for sure. I thought that initially but I don't believe it to be true. I remember when I was first diagnosed and the doctor was talking to me about Copaxone, she showed me some charts that showed the differences in the number of relapses over a set period of time, but the end result was the same. As each person is different, relapses and disease progression is different. Less relapses is obviously a good thing but is not necessarily a guarantee against reduced disability or disease progression. Some people move rapidly from RRMS to more advanced stages than others. Some people start the illness in a more advanced stage. And that is why I feel so strongly about being proactive. Again, there are no guarantees but we can at least hope!

Doctors truly know so little about MS. Each of us is really on our own.

[jimmylegs]

there is a certain amount of interesting research on markers that change during relapse as opposed to during remission. for example, serum uric acid. low in general in ms patients vs healthy controls. even lower during relapse. higher, but not as good as healthy controls. go on check wikipedia it'll back me up (bc i added most of the low uric acid & ms content lol). there is another batch of research that shows serum zinc and serum uric acid are inversely correlated. i had ms average serum uric acid for years and no matter how many gout inducing luxuries i consumed, my serum ua wouldn't budge. if anything it stubbornly sank a bit lower. then i identified and corrected zinc deficiency. *then* i realized the zinc ua connection and started testing them together. magic. serum ua climbs in lockstep with serum zn. high normal zinc, healthy control levels of ua. so as long as i keep my zinc up, my serum ua levels will never again be consistent with the those seen in ms patients. i enjoy finding ways to make my bloodwork completely inconsistent with the typical ms-er so far that includes meds too but, never say never right?