Your views on commencing abc's

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Your views on commencing abc's

Postby elly » Sat Mar 10, 2007 9:15 pm

Hi Everyone,

Sorry about bombarding you all with questions but you all seem to know what's going on with things.

On Friday i will be seeing the neuro to get my lp results and i'm assuming he will discuss with me my options.

If i have ms (which is the most likely scenario) i would like to consider one of the abc drugs in the hope of slowing down the progression of this nightmare disease.
Ideally i would like to wait and see as he suggested earlier but i thought that if i do nothing i'm kind of putting myself at a disadvantage because if i do have another attack who knows how i will be after it. Aren't these drugs supposed to be at theit most effective after a CIS or early ms?

I would love to know your thoughts on this issue.
Obviously it's up to me but it's good to hear others views on this too.
I'm certainly frightened of the side effects but hopefully i'll be ok with them.
My main concern is my young family so i'm willing to try almost anything!

Thanks

Elly
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Postby Lyon » Sat Mar 10, 2007 10:12 pm

Hi Elly,
When my wife was diagnosed a year ago we thought that we spent quite a bit of time on the decision and she decided on Rebif because even though it needs to be refrigerated it can go for long periods without refrigeration (travel consideration), because it isn't intra muscular, is available with an autoinjector and only needed to be injected like every other day.

She seemed to be doing very well on it but as she got to the last shot before full titration her neuro noticed that her liver enzymes were hight and pulled her off it. By the time her liver enzymes lowered my wife couldn't convince herself to start the routine again.
Aren't these drugs supposed to be at theit most effective after a CIS or early ms?
I'm not sure it's accurate to say that the drugs are more effective then but they aren't effective at all in the later stages so the idea is to start treatment as early as possible with the hopes of holding off the later stages as long as possible.

I'm not aware that there is any concrete proof that the drugs hold off progression to the next disease phase but if they really do reduce lesion and disability progression it seems logical that they might.

Good luck with your next neuro visit.

Bob
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Postby thinkingoutloud86 » Sun Mar 11, 2007 1:24 am

Elly,

To begin, good luck with your visit with your neuro. Hopefully, you will get positive news. In the event that a CIS or MS is in the bag, you're asking the right questions and I would encourage you to keep throwing them out there.

As far as the ABCs, I think you're going to find a variety of opinions, because there really isn't one clear cut winner of the bunch. What I can do is tell you the thought process I went through in 2004 (which is when all of this stuff hit me). This is by no means the only answer and I would encourage you to continue asking others as well, but this is how I came to my decision.

I ended up seeing 3 diff neuros at the beginning (this was due to a diagnostic discrepancy between the first neuro and the second opinion). All 3 neuros specialized with MS, were well published, and were considered the biggest names in MS where I live. All 3 suggested different meds. One suggested Copaxone, another Rebif, and a third Betaseron. As you might expect, it left my head spinning (on top of the already present vertigo:)

I did my own research and that helped somewhat, but not enough to clearly delineate one med over another. The end points of some studies looked at MRIs whereas others focused more on relapse. It wasn't always apples-to-apples.

I ended up choosing Copaxone. I did this for a few reasons. From my understanding, the side-effect profile for Copaxone was less problematic then the Interferons. For example, one of the possible side-effects of the Interferons include a risk for depression. I am someone who has had to deal with that at times and I didn't want to increase the risk of it. The Interferons can also effect one's liver. At this point, my MS (or CIS) is pretty mild and I didn't want to put it at risk, unless I had to.

One of the main drawbacks of the Copaxone is that you have to give yourself daily shots. At first, that sounded awful. But, I've gotten used to it. At this point, the shots don't even bother me.

I can't emphasize enough that I am not promoting one med over another, this was just how I came to my decision. In fact, for the first year or so, I wavered on changing. And, I still might in the future. But, I've been fairly satisfied with the Copaxone up until now.

I hope this helps. If I can be of any further assistance, please let me know.

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Postby Loriyas » Sun Mar 11, 2007 7:50 am

Hi Elly!
I'll offer you my experience also, since you are looking to hear what has worked for others. I was first started on Betaseron (almost 5 years ago) and was on it about 5 months. But it increased my liver enzymes really high so I had to go off of it. I then went on Copaxone and have been on it ever since. I have been mostly happy with it. I have had some lipoatrophy (skin indentations) that Copaxone can cause but not so much that I would use a different medication. In all the time I have used Copaxone I have just had my first exacebation, and I can't even blame it on the Copaxone not completely working as I've had 3 surgeries this past year and I contribute the exacerbation partially to that.

It is good that you are researching everything so you can become educated about all of this. I think the more you know the better you will feel.

Good luck with your neuro appointment.

This website is a wealth of both information and support. I have found it to be a wonderful place.

Lori
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Current medications reviewed in Behan's paper

Postby lyndacarol » Sun Mar 11, 2007 9:11 am

I find MUCH valuable information in this paper by Behan and Chaudhuri, first posted by Finn in this General Discussion forum. I encourage all to read it!

http://www.mult-sclerosis.org/news/Nov2 ... heory.html
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Postby elly » Sun Mar 11, 2007 8:43 pm

Thanks everyone for you replies,

This limboland that i'm in really is a pain in the a**e.

I know that even if my lp results on Friday are positive my neuro will probably tell me to wait and see. There's no test for ms blah blah blah...

Even if all the tests that have been done as well as my symptoms and the fact that they came on approx3-4 months after childbirth look sooooooo much like ms why can't he just say " Sorry but you have ms".
Realistically what are the chances on this only being a CIS? Of course i would give anything to be in that category but i've never heard of anyone with that....i don't even think it exists. They would need to follow someones lifespan until they die to determine that and
i've never heard of such research.

I don't mean to sound so negative and cynical but i don't know of any other cns disorders that show lesions on mri, come on a few months after childbirth and where the symptoms are only sensory and have been the same for almost 3 months.

Thanks for letting me vent :roll: :D

Elly
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Postby Muu » Mon Mar 12, 2007 3:19 am

Elly,
apart from my first bout of optic neuritis (aged 20) the most noticeabale symptoms of my ms came on within 3 months after the birth of most of my children (aged 28 and 30). Altho initial tests suggested ms the neuro adopted a wait and see approach. No crab drugs for me at that stage. With hindsight I don't know whether I should have pushed for drugs earlier. I was dx with spms aged 40 primarily due to footdrop symptoms and here in the uk there are no licensed drugs available. So, on the one hand I hand 20 years of relatively symptom and drug free living but on the other hand would opting for a drug regime earlier have postponed the develpment of the ms? Difficult question and a difficult choice. If I'm frank I think that after I'd had both children I would have opted for a regime- the outcome may have been the same but one never knows. Also its worth looking at the posts on supplements esp Vit D3 to name just one that many have found helpful.
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Postby Loobie » Mon Mar 12, 2007 9:57 am

Hi Elly,

I'll tell you my personal exp. with Avonex. BTW, I am not on one of the CRABs right now since I'm in a trial for Tovaxin. I started on Avonex immediately after dx. Bob is right in that the prototcol for the CRABs is to catch it early and hope it works. My neuro. chose Avonex for me since I expressed that I was active and travelled alot. The once a week vs. every day or every other day was very appealing. However, the 1-1/4 needle looks like a harpoon when you are giving yourself your first dose since you have to sink it all the way in. However, you get used to it quickly and I always found a way to sink it in my thigh.

I had to go off after 3 and a half years due to an increase in the side fx. Most people will experience a lessesning in the side fx, but I am a person who side effects really seem to hit. I can't even take a Sudafed without letting everyone around me know since I become unhinged on those things. If you don't experience side fx from most meds. maybe that's the one for you. As far as I know, all of the interferons show about the same efficacy (I could be wrong since I vaguely remember Rebif touting higher percentages) as does Copaxone. Yes there are slight percentage differences, but that is probably picking shit with the chickens.

The goofy thing about these drugs is this: they know they work some of the time, but there is no way for you to tell if it's working for you or not. You can still have a relapse while on them (as they state), but the hope is that it slows it down. I have personally always looked at the CRABs a 'just in case' drug. You don't know if it's working, but it does in some, so we take it just in case.

Copaxone is interesting because the full mechanism of it is not fully understood. However, had I to choose a CRAB again, I would choose Copaxone SOLELY on the basis of less side fx.

Like everyone is telling you, no one can objectively say "take this one, it's the best". It really comes down to a lifestyle choice. I went 4 years without any symptom changes from my first "event" so maybe it was working for me, or maybe it was just time for a relapse; who the hell knows? I would probably choose to get on one of them in your case, but keep you ear to the ground because there is a lot of 'stuff' going on right now, and this is the place to find out about it. Until I found this community, I had about 10 different pages I would go to daily to see news. I don't even visit those anymore. People on here will tell you straight and that is what we all need. Also, if I read something in an MS publication or hear about something on the news, I come here and find out about it in detail. We are very current events here and there are some people on here who work tirelessly at gleening information and putting it on here. Welcome, and good luck at your appt.!

Lew
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