need help counting

Everyday living
1

ok here goes. I have been on copaxone for almost a year and I don’t know if I had relapses or not. I work full time (9 hour days), walk 40 minutes every weekday and do some weight training on weekends. I feel tired after my day and usually I’m too tired to do anything after work. Nontheless, I think I am only slightly more tired than my partner who doesn’t have ms. I have some ms related problems - different sensetion in the fingertips of the right and left hand and at the bottom of my feet, occational (a few times a month) weakness in my right arm (it is more difficult to lift with it) bowel/blader broblems that come and go but never are so severe that that they stop me from doing things I would normally do. My doctor sugested I go on Tysabri as I have quite a few lesions and problems (as mentioned above). I said no to Tysabri simply because: 1. PML freaks me out and 2. I cannot take a day off work every month… I am on the swank diet and believe that it works for me.

I would really like to know what constitutes a relapse. I have not a clue how to count them and so I cannot say “I’m having too many relapses maybe I should reconsider Tysabri?” Nor can I say “Copaxone is really working well for me” because I feel just the same as I did before starting it…

Please help, what can I count as a relapse?

Maybe I have progressive ms, in that case niether Copaxone or Tysebri will help me…

2

Hi Shebrew,

I’m sorry this does not really answer your question, but to look at it another way, have you asked your consultant why he/she thinks Tysabri is indicated?

I have not accepted any DMD to date, and my consultant is cool with that. BUT, if he suddenly started mentioning Tysabri, it would certainly make me question whether I was doing quite as well as I thought, and whether the situation was more desperate than I’d realised.

My understanding is that Tysabri isn’t routinely offered (in part because of the PML risk), unless someone’s MS is considered aggressive enough to justify it. So if my consultant suddenly pulled that one out of the hat, I’d be wondering what it is that’s got him worried, and asking him to explain in more detail why he thinks a more radical intervention (or, in my case, any intervention at all) is necessary.

If it’s not based on frequency and/or severity of relapses, as subjectively experienced by you, I can only assume it’s due to the nature of what he’s seen on the scans. He must have seen something that convinces him he’s not dealing with a relatively benign case. I’m not trying to scare you; I just think Tysabri is not something that would be offered, unless there was a compelling case. So you need to understand what are the distinctive features that make you a candidate.

As someone who’s opted not to have DMDs at all, I’m certainly not in any way trying to push you towards it. But I do think that if Tysabri was on the table, I’d have to seriously reconsider, because it’s my belief it wouldn’t even crop up unless my neuro thought things were serious.

I’m like you - still work, walk a long way, push weights when I remember, and am a bit vague as to how often - if at all - I have relapses.

The last definite one I know I had was over two years ago, which led to me getting diagnosed. That one was pretty easy to spot, because I got completely numb feet, and various other body bits!

But since then (touch wood), I’ve had nothing anywhere near as dramatic. Yes, there have been times I’ve felt a bit more tired, or had more tingling or aches and pains than usual. But nothing that’s resulted in me being off work, or caused me to say this is definitely a relapse. I feel more like it’s always simmering, but hasn’t come to the boil (full relapse) in a couple of years, if that makes sense.

So yes, I agree, when it’s like that, it’s not very easy to put a number on it.

Tina

3

Thank you for your reply. I did ask him why he thinks I should be on Tysabri. His reply, after telling me about the great results he had seen, was that it seems to him that after 6 months on Copaxone there is no change in the MRI and I am not feeling improvement of symptoms so we should try something else. My arguments were: 1. Many people have residual symptoms after their initial relapse that never go away(my initial relapse was march 2010) 2. 6 months is not long enough to know the benigit or lack there of of Copaxone 3. I haven’t had a ‘proper’ relapse since march 2010 - or have I ?

4

I’m not surprised you don’t have a whole lot of faith in your neuro! Copaxone does not officially improve existing symptoms or reduce the number of lesions. Its purpose is to reduce the number of relapses and reduce the severity of the ones you still have, which (with the other changes you’ve made) it seems to be doing not too badly at all!

Saying that, maybe you should have a look back with the official definition of relapses in mind? According to the latest McDonald criteria: relapses are officially any neurological symptom that lasts at least 24 hours and is not accompanied by fever or infection.

The year before I went on Copaxone, I had 5 relapses (one of which was a biggie). After starting on Copaxone, I had 3.5 years free of all but very very minor things. My neuro took me off it when I started to relapse again (and because I had had one new lesion in those 3.5 years). If I could go back in time, I would do anything to stay on Copaxone. I had back to back relapses in the 15 months after coming off it and went from an EDSS of about 1.5 to 6 because of the biggest of these.

Because they are preventative, it’s impossible to say what a DMD is doing for someone. Based on my experience, Copaxone was working for me

Maybe your neuro is looking at your relapse history as well as the number of lesions you have though? Maybe he reckons the “big gun” of the DMDs is warranted - to make sure you stay well? I had an MRI to check if I was eligible for Tysabri when I came off Copaxone. I tortured myself with the whole PML debate before the results came back and finally decided that I wouldn’t have it unless I had loads of new lesions (this was before there was a JC virus test). It turned out I wasn’t eligible anyway! I know more these days and I would happily fight to go onto Tysabri if my test was negative. I honestly don’t know what I would decide if it was positive.

Karen x

5

Hmmm.

I can see your point.

On the face of things, it doesn’t seem as if your situation is a lot different from mine, and my neuro is content for me not to be on DMDs at all at the moment - let alone Tysabri!

One thing that gives me confidence is he promised he would tell me if he thought I was doing a silly thing, so as yet, I’m not doing anything contrary to his advice.

It does seem as if your neuro is unusually willing to prescribe Tysabri - which might be a good thing, of course. But not if you’re feeling pushed into accepting a risk you’re not convinced is justified.

I agree about the enduring symptoms not being indicative one way or the other. None of the firstline DMDs are said to reduce symptoms, as I understand it, so I’m utterly unsurprised you’ve had no luck in that direction. Don’t honestly see what that has to do with it.

I’m wondering if a second opinion might be the way forward here?

The only trouble is that if Neuro A says you really ought to be on Tysabri, but Neuro B says rubbish, you’re doing fine, you still won’t know who to listen to!

I suppose if Neuro B also said you should be on it, it would at least give you some reassurance there’s a strong clinical case, and that it isn’t just a rather idiosyncratic view by one individual.

Tina

6

What a difficult decision

No one can second guess your neuro’s thinking. All you can do is ask him to explain his reasoning behind his recommendations.

I wouldn’t worry too much about the risks of PML. The risks are very small and they will monitor you very closely. But that is easy for me to say when I am not directly affected.

Good Luck with whatever you decide.

7

Thank you for your replies. I honestly think my neuro’s logic is - many lesions+Tysebri works best = you should be on Tysebri. I am of course worried that he is right and if I were 50 years old I would seriously consider it. But I am 29 and plan to have children in the next few years and i tolorate Copaxone (grade B toxicity as opposed to grade C for Tysabty) quite well… And the benifit of Copaxone is said to increase with time…So I think I will say on it at least until I have children… Tina, have you talked to your neuro about Copaxone?

8

Two things sprang to my mind when reading your post. The first was hearing in my head the voice of my neuro from years and years ago saying, ‘Lesion load and actual disability are surprisingly poorly correlated,’ and the other was the memory of hearing somewhere that so much depends where the lesions are, and that, if you’re lucky, you can get away with a good few brain lesions if they happen not to occur anywhere too critical, but the odds are much shorter for spinal lesions, because there’s so little space in there, and there is less chance of a lesion finding a harmless place to be.

None of which helps you with your decision, I’m afraid! But they are just typical of the kind of potentially conflicting messages you will be getting from all directions as you try to make sense of your complicated situation and decide what to do next! I really do feel for you.

The relapse question isn’t an easy one either. Some relapses are obvious and textbook, but I’m in the same boat as you about the vaguer stuff and I’ve never got to the bottom of it.

Alison

x

9

Hi again,

No - we did discuss DMDs, but only to decide I didn’t want them!

I had expected a bit of opposition to that - to the extent I’d been anxious about the appointment. But to my surprise, he said: “Fine. that’s what I would have done, as well.”

I made clear I’m not necessarily closing the door on them forever, and that I’d be willing to reconsider if my MS became more aggressive, or if anything new became available that changed the picture.

But for the moment, I’m quite happy with how stable I’ve been without treatment, so at my annual review, I won’t be looking to change anything.

True, I don’t feel very well, but as we’ve already discussed, the DMDs don’t do anything to alleviate residual symptoms from past relapses anyway.

I’m not sure whether or not I’m still relapsing. There have been a few times I’ve thought: “This is a bit iffy: is it or isn’t it?” But no incidents I’m absolutely sure have been relapses.

To be honest, if you can’t tell whether or not you’ve had one, it can’t have been a very serious relapse anyway, can it?

Tina

10

Tina - it might sound counterintuitive (as dmds dont cure existing symptoms) but it is those symptoms I think about everyday when I stick the needle in… I don’t know if I would be able to inject (psychologically) if I didnt have something to remind me that I am ill… At the same time, it is very frustrating to inject and not feel any different because who’s to say I wouldn’t be just the same if I wasn’t injecting… I perceive Copaxone (from what I read) as a very “light” and “harmless” drug that I would only stop using well after I become pregnant and not before, because there is no evidence it harms foetuses in animal studies, and women who mistakenly got pregnant on it didnt experience a higher percentage of problems than in the general population.