Question about Meds

[sllowe]

Quix and Friends,
Quix you mentioned in your post to me things to consider re: the meds for MS. One in particular, I re-read recently:  the incidence and effect of neutralizing antibodies (was important for yourself and JonM).  Does this relate to one's own antibodies? I just was unsure what it meant, and since the board is so busy, it's not urgent. If either you or Jon could elaborate at some time, that'd be great.  Also, Quix, wanted to ask you - how do you feel (in your case) regarding the onset of symptoms/sickness, and then length of time it took for dx and then beginning therapy. The changes, your disabilities as they stand now as opposed to years back ? My apologies if you've already posted on this, after searching, I didn't happen to see.
Be well,
sl

[JonM]

NABS (Nuetralizing Antibodies) are a hotly debated topic in the MS medicial community.  What happens is that a person taking interferon may develop an antibody to the interferon, that's what we call a NAB.  This NAB has no adverse effect on us, but, here's the contentious part, may render the interferon ineffective.  There are Nueros who think this does happen and those who don't.  Research has indicated both ways, however the broadest study in Europe indicated that NABs did have a negative impact on the effect of interferons.

This weighed heavily on my mind when I chose Avonex. I was told that if these NABs developed that all interferons would be rendered useless. So I chose Avonex. Since it is the least injected you end up with the least amount of actual active drug in you over time.
Avonex is once a week 30mcg
Rebif is 3 times a week 44 mcgs per
Betaseron is every other day around 250 mcg per

well as you can see that over time Rebif users get 4.5 times as much
Betaseron users get almost 20 times as much

hence the reason behind the NAB rates for prolonged use
Avonex 3-5%
Rebif 15-20%
Betaseron 30-40%

However, evidence has shown Rebif and Betaseron to be somewhat more effective in slowing MS.
Since my MS is mild right now, I decided to take my chances with the weaker formula in Avonex and greatly reduce the odds of me getting NABs.  I'm taking a risk, but I can switch later if the MS rears up, or the MRIs show new lesions.

Here is a web site with more details.
http://www.medscape.com/viewarticle/461270
Also Biogen Idec and Avonex talk about it quite a bit in their marketing since it casts them in positive light.  You won't see it on Rebif or Betaseron sites.

Hope that explains it.

[Quixotic1]

Thank you so much for posting that.  In all honesty my neuro went through argument very quickly, tho thoroughly.  I followed it and it made sense to me, but a few months later I couldn't reconstruct the argument (memory problems) and knew I'd have to look it up.  Yes, The Avonex shows a little less aggressiveness in slowing the disease, but it's incidence of NAB (which my neuro does believe in, tho he did say it is controversial.  He's also one of the brightest doc's I've encountered in a long time, so I do trust him) was my deciding factor.   Whether the antibodies truly neutralize the effect of the medicine is what is controversial.  My doc says that there is a good correlation between the appearance of these antibodies and the reappearance of disease activity.

If you look at the numbers of people who had reduced relapses or slowed progression between Avonex and Rebif or Betaseron, you see that for a little increase in improvement you get A LOT of incidence of neutralizing antibodies.  If the Avonex doesn't work for me, and if I don't have NAB, then I can move up to Rebif or Betaseron.  If I am on Rebif or Betaseron and they stop working and I do have NAB (which is more likely) then I can't use any other Interferons.

Jon - So I don't need to look it up.  What is the data on Copaxone?  Again, thanks for being here with the info!  Quix

[Quixotic1]

Hi, glad to hear from you.  You asked an interesting question.  How do I feel about the delay in my diagnosis.  I don't think a lot about it.  I am more angry about the way he treated me, than the delay, I think.  By the time I saw him I already had most of the disability I have today.  I already had the right leg weakness and spasticity and the incontinence.  Oh, and the fatigue.

The only thing that has happened in the interim, last summer was the truest and only real relapse I've had.  I got out of a (hot) shower and was drying off and suddenly could not lift my right arm high enough to put moisturizer on my neck. It was so heavy and fatigued.  All evening I couldn't lift my arm or use my hand, even to knit which requires minimal movements.  The next couple weeks it was a little better and then gradually improved over the next few months.  I thought it completely resolved, but it is still slightly weak.

As I researched the whole thing and realized that it could be nothing other than MS (except for the erroneously "negative" MRI) I realized how my neurologist had coyly insulted and dismissed me.  He was very clever in it with the exception of coming out and "asking " me if I WANTED an LP.

In reality, 90% of my disability is the vertigo and we have good evidence that, at least in the beginning, it was/is peripheral (not MS).  I already felt that my life had been taken from me.  The MS was truly just the insult added to injury.  It feels unfair, but what he did was mean-spirited and careless, but does not rise to the level of malpractice.  He has recently received a nastygram from me telling him what I think of him.

I don't think I would be that much better off had I gotten a diagnosis a year or two earlier.  It doesn't feel to me like it matters.

Quix

[sllowe]

Wow - I think I understand this, and thank you for your thorough reasoning behind the data because it would of taken me some time to analyze and draw the conclusions myself (if even).  Smart, very smart decisions. . .  To clarify, Quix, is there is no means of correcting vertigo? That's just horrible. Jon, how long did it take you do be dx'd and did they give you a choice, or did your doctor provide you with some insight.  Also, were NAB is concerned, if I've read this properly, when on the interferon, one wouldn't necessarily know by way of symptoms that this has occurred? Do they do some sort of test? You've both been so helpful, thank you so much.
sl

[Quixotic1]

With regard to the NAB.  If you are on an interferon, seem to be doing wel, then the symptoms/relapse happen and keep happening (a process that would be observed over months, probably) they can look for the presence of NAB in the blood.

A little more info about NAB.  This is what I understood from my neuro.  There are many types of NAB that have been found in the lab.  These antibodies can be shown to "bind" tighly to the interferon molecule.  Finding out if they effect the molecule's effectiveness is harder.  Some, in the lab, have shown that they DO apear to affect themolecule's function.  When those antibodies are found, in a person who's response to their med seems to have disappeared, it is taken as indirecvt evidence of the drug being neutralized before it can act.  

I think a single relapse wouldn't do it.  The interferons haven't been shown to stop relapses, only to make them less frequent.  So they will also have been monitoring the MRI (using contrast) to watch for emergence of new, enhancing lesions (make sure you read the post on how MRI's work) and if symptoms recur, or the CNS suddenly has more new lesions and the NAB are found they draw the conclusion that the drug has been neutralized..

My doctor both was open with the facts his clinical studies were, and continue to be, with Avonex and that Biogen Idec functions his research.  He told me to take a month to research them, get my head around my diagnosis and he would prescribe whatever I chose.  He also told me that when he decided to pick a drug to study and work with he chose Avonex because of the process we discussed above.  It's the lowest dose, if it is ineffective you can move up in dose (Rebif or Betaseron) and NAB are is a complication.

My vertigo:  since 2000 I have seen one of the world's foremost authorities on peripheral vertigo.  He has done everything he can think of to treat it, but after short improvements it has returned and eventually worsened.  My new neuro has tried some new drugs with no improvement, so it appears intractable.  It has also changed some in the last year or so - taken on some new dimensions.  I think the MS may now be playing a role.  I do have multiple brainstem lesions that are visible, and may have more that aren't.

It's my impression that early in the disease and until the person's typical course is determined, they repeat the MRI's at intervals - often yearly.  In study populations they are repeated depending on the protocol of the study.  In people with stable courses the  MRI wouldn't be repeated less prompted by new symptoms.

If Jon doesn't answer about the Copaxone, I'll go online and refresh my memory as to why I didn't chose it.

Quix

[sllowe]

I'm re-reading this, re-reading this. . . takes awhile to sink in. . thank you again.  I wanted to share with you that I passed along your MRI Lesion explanation to my mother, who had went to one of my Neuro appts. - you know THE long awaited appt, the one where all the results are in, you know they are, and you expect an explanation from the DR, he/she is going to give you something to make it all go away, and you don't get one? ha/ha. . .Hate those. .   Well, anyway, she had the same thought as I did about your explanation w/that post. That it was crystal clear, that these Dr's should, at a minimum, provide this level of explanation, and this type of a personal service.  Thank you from the bottom of my heart, thank you.  There must be so many families in the desert wishing you were still on that playing field (you did say NV right - hope my memory is on today).  I know you served them so well, for as long as you could, and I pray for your vertigo to diminish. . . I just can't imagine THAT on top of the MS.  Talk soon,
sl

[JonM]

A study showed all users of Copaxone developed NABs over time, however the presence of these NABs was shown to not have an adverse impact of the drugs effectiveness.

I did not consider Copaxone, because my Neuro said that it was better suited to single symptom MSers.  My exacerbation had three different and distinct symptoms which indicated a little more aggressive approach, thus an interferon.

If the MD suspects NABs may be interfering with the interferon (play on words, I know), then they order tests.  I've heard they are expensive and have to be sent off to someplace special for analysis.

I was DXd with MS rather quickly.  My first exacerbation was serious and obvious and had three distinct symptoms in three different systems, plus a positive brain MRI and positive CSF analysis from the LP.  There never was a doubt; I knew it before they told me.  I really aligned with all the classic signs.  He presented me with a choice between Rebif and Avonex and explained the injection difference, frequency and the NABs.  They told me that the Avonex would take longer to be effective, but that after 6 months it would catch up with Rebif in effectiveness.  I'm not a needle phobe so the big needle and IM injection did not bother me, so I picked the one with the least NAB problem, because I know I'm going to be taking this for a long long time and I didn't want to take that 15-20% chance.

Jon

[sllowe]

Was combing through posts for ESS, looking for a "talking to" I asked for last year (I was on the fence last, indecisive, etc)

This is a great thread if you are researching the CRAB meds, includes the antibody discussion, etc.

I hope it helps those facing the decision, because it helped me so much. . .
be well,
SL

[essdipity]

Thnks so much. I have marked this as a Favorite so I can come back to it quickly.

ess