Neurologists and DMDs

Everyday living
1

Can I ask whether anyone offered beta interferon or copaxone was told by their neurologist that these drugs only reduce relapse rate by one third? Or that they reduce accumulated disability by less than this or not at all? Or, finally, that if you take them and then stop them to go on to tysabri (which reduces relapse rate and accumulated disability by two thirds) it makes it more likely that you will get the horrible, life-threatening side-effects which can be associated with tysabri?

I’m not making these figures up, they’re all on the MSS website. I’m just confused as to why neuros don’t tell people - well maybe they do, that’s why I’m asking the question.

2

Hi I was def told that they can reduce relapses by one third.

3

Yes, I was told they can reduce them by a third

4

I think that the full version on the present DMDs is that “ON AVERAGE” they reduce relapses by around 30%, and that those relapses that do occur tend to be not so severe.

What “on average” really means is that most people will see a benefit, and the size of that benefit will vary. What this does not mean is that the effect of the relapse is reduced. So if the relapse has given you a dropped foot, you will still have it after the relapse.

Whether reducing the number and effect of relapses is acually reducing the effect and progression of the disease has been discussed here in the past. All I know from personal experience is that Copaxone appears to be of benefit to me - but I would probably go for BG12 as soon as I was offered it.

Geoff

5

Hi, I started on betaferon when it was newly licensed (1996). My neuro made it quite clear to me that all it would do was to potentially reduce relapse rates by one third an that it did nothing for pre existing symptoms. Tysabri wasn’t available then so never had a discussion about that. Cheryl:-)

6

Thank you for these answers. I’m still curious about whether any of the neuros told anyone that there is very little or no reduction in accumulated disability from taking these drugs. Or was it just assumed that if the relapses were reduced by a third, then the accumulated disability would be reduced by a third as well?

7

Hi again, yes he also made it quite clear to me that there would be no reduction in accumulated disability. He was very keen to emphasise this point, in fact he couldn’t have been any more explicit in this. Cheryl:-)

8

Ditto Cheryl.

9

Hi Sewingchick,

Yes my last neuro - who was NOT my usual one - did mention there was no evidence they reduced or prevented disability. I was somewhat surprised, but avoided mentioning it on here, as I knew it would prove controversial. However, it’s not some opinion of mine, but what she told me.

For me, it didn’t alter anything, as I’d already declined DMDs (with neuro’s full backing), so in a way, it endorsed my decision.

I don’t feel DMDs were ever sold to me as a wonder-cure. Nobody ever promised they would stop relapses OR prevent disability. In fact, when I double-checked the neuro didn’t think I was doing a silly thing, he said: “If I could assure you these would make a big difference in ten years time, make no mistake, I’d be pushing you.”

So they were never “oversold”, to me. Though in retrospect, I feel I received very little info at all - just some literature to take away and read. I don’t think anyone ever talked me through it, to check I’d understood. I rather got the impression everyone thought someone else had done it. This might have been a complication of being diagnosed on BUPA. Although the transition should have been seamless, because I even stuck with the same neuro, there was an impression (not provable, because I don’t know what I should have had) that some bits had been left out.

Tina

10

Neuros normally only tell you the “approved” information (the sort of stuff that’s on the msdecisions website). They don’t necessarily tell you all the more recent research (some of them, most of them?, probably don’t know it). For example, the 30% reduction in relapses on average is the normal stat bandied about, but what about the 46% reduction in relapses that Rebif44 got in the Campath trial and the fact that it is considered the injectable that new drugs have to try to beat as far as NICE is concerned? What about Avonex’s less than 20% reduction in relapses in the first year, but that it has the best data for slowing progression and there’s evidence that it slows cognitive decline and may be more likely to be effective long term because patients are less likely to develop NABs? What about the significant extension of life span found in people who only had betaferon for two years in the original trial? Etc.

There is plenty of evidence that the injectables reduce disability, especially if started early. What there is less evidence for is that they slow progression. I believe that only Rebif and Avonex make that claim on their label, but I could be wrong. (We now know that relapses and progression are different processes anyway.)

Ultimately, it’s a simple equation. Relapses = disability therefore less relapses = less disability. If you recover beautifully from relapses, then the injections may not be worth the hassle. If you don’t, then (in my opinion) you’d be daft not to want to have fewer of them.

My neuro is a very well respected MS specialist. He suggested Avonex when I came off Copaxone. I said no, Rebif44 please. He just shrugged and said fine. Six months later he said to me, “I was surprised to see how well Rebif44 did in the Campath trial. Have you seen the paper?” (or words to that effect.) WhyTF did he think I chose it in the first place?!

Neuros are busy people. The best way to know what’s going on is to do your own research and keep up to date with the latest results. Unfortunately, most people don’t know that :frowning:

Karen x

PS I might have the 46% number wrong. I know it was about that though. I think the Avonex number might be 18%, but my memory is not exactly reliable these days - I should maybe have gone on an interferon earlier! :slight_smile:

11

Hi,

The 30% on average is a statistic. There’ll be people who have 100% reduction of relapses/potential relapses and people who maybe will have no reduction in potential relapses/actual relapses.

It also comes from the years before the DMDs were widely available. I started Rebif in 2000 and was told this, but the number was already more than 5 years old.

Now, with better MRI imaging and more MRIs performed the numbers could (in my opinion, should) be quite different.

The DMDs were made available to those who qualified in 2002, in the UK.

The prescribing guidelines were quite strict. However, in the US, where neuros have been paid to prescribe various drugs, the DMDs were offered to anyone with an MS diagnosis who could pay. This means that people with SPMS and PPMS were given drugs that don’t work for their type of MS.

The simple truth is, if you are relapsing, you are ill. The relapse will cause a lesion in your brain - a hole which will fill with liquid and you will suffer some disability - albeit temporary in some or many cases.

I never want another relapse. I know that in the next 3 years or so, I’ll have another relapse.

There’s no way to tell if you’ll progress or not, or if you’ll have brain atrophy. I’ve been lucky in that I haven’t progressed in all that time.

I have residual damage from relapses, I can’t bend my knees, I can’t judge distance on my right side and I can’t do a whole week’s work. I have problems with my vision and I can’t drive a car, as my spatial judgement is impaired.

You may find that you are lucky with side-effects. I’ve been very fortunate, in that I haven’t had the aches or pains or shivers.

I believe that less relapses/no relapses is a goal that can be achieved. Relapses are bad. Full stop.

best wishes,

K

x

12

When I started on Copaxone I was having about 5 relapses a year. I was told it would reduce my relapse rate by about 30% but that it would not fix any of my accumulated disability but that the fewer relapses I had in the future the less damage I would have and therefore the better my chances were.

The way I looked at it was that by reducing 5 relapses to 1 or 2 a year was a vast improvement in my quality of life so for me that was the deciding factor. The Tysabri question didn’t come up as I don’t meet the criteria for Tysabri here in Australia anyway…

Sadly I turned out to be allergic to Copaxone and was switched to each of the Interferons in turn but it rapidly became apparent I am allergic to them too. Very rare to be allergic to all 4 . I then went on Cladribine until it was pulled from the market and am now waiting for BG12 to be released and I will be first cab off the rank on that as I am promised a place on the Product Familiarisation Program as soon as it is approved. With each drug my neuro has kept me fully informed about all the benefits and risks and what realistic expectations I could have from the treatment.

Have you had a bad experience with your neuro?

B

13

The experience I had with a neuro I no longer see, because he was useless, was that I was offered interfons or campath, at a stage when I was deteriorating slowly but not having relapses. I had heard (on Radio 4) that the drugs I was being offered reduced relapse rate but didn’t make any difference to accumulated disability. I said to the neuro that I couldn’t see any point in taking them. I couldn’t see any point in taking them even once I started having relapses if I was going to end up similarly disabled, in spite of taking them.

My husband really wanted me to go on them because he couldn’t really believe the NHS was doling out an expensive drug that did so little. He thought I must have my facts wrong. In desperation I said to the (admittedly useless) neuro, ’ would you take them if you were in my position?'. He said no, he wouldn’t.

But maybe Karen is right and the stuff on the MSS website is out of date and they are really good drugs and I would be in a better state if I’d been on one of these drugs for the last five years.

14

Hi Sewingchick,

I applied the same logic as you. Relapses had (and have) been infrequent, and mostly not severe, though I feel I am still slowly deteriorating, even in the absence of clear relapses.

Like you, I couldn’t see any point in trying to reduce relapses by one third if I had them only rarely to begin with. And when it became clear the jury was still out on whether DMDs made any difference long-term, I concluded they weren’t for me.

To his credit, my neuro did not attempt to influence me either way (although maybe some people would not like this approach, and would prefer the neuro to TELL them what to do).

However, after I announced my decision, he said: “Good girl, that’s what I’d have done too!” He obviously had no vested interest in saying that to a patient who’d already decided, so it wasn’t not a question of saving NHS money, or anything like that.

I think: “What would YOU do?” or: “What would you recommend your wife/daughter do?” are very valid questions, although not ones all neuros would be willing to answer. I can see no reason at all to take something my neuro wouldn’t take himself, in my place.

Tina

15

Sewingchick: if you weren’t having relapses, then injectable DMDs may have done very little for you because the disability that they help to prevent comes primarily from relapses and not from progression. Please don’t beat yourself up about your decision.

One of the biggest problems about measuring disability is the EDSS scale. It’s almost never applied properly and the bandings are ridiculously wide and variable. Take EDSS of 6 for example: it should mean all sorts of things, but it basically boils down to needing a single walking stick. So, within that level, you might have people with a huge variability in disability - some people might be walking quite well, but need a stick for balance or just to keep them in a straight line while others might be walking really badly and actually can’t walk without the stick. Are they equally disabled? According to the data, yes. In reality, no! Also, someone who is a 6 may have a relapse and get much worse in several different ways, but still officially be a 6. A DMD might have prevented that extra disability, but according to the data, it did nothing. That’s just one of the reasons for the debate about DMDs and disability.

It’s only fairly recently that people have started differentiating between disability from relapses and disability from progression: they are different things and that’s not captured by the word “accumulated”. The injectable DMDs definitely help the former, but how much they do for the latter is debatable; newer drugs are significantly better at dealing with progression.

So, in my opinion (others will disagree), it is sensible for someone who is having relapses to go onto an injectable DMD. If that person is also experiencing gradual progression, then one of the new DMDs is preferable. If someone relapses rarely, but they are always whoppers, then it’s worth avoiding them so a DMD is a sensible option. If someone is not relapsing, then an injectable DMD may make very little difference so there’s probably little point in it.

Kx

17

Mine did too. I asked him what he’d do and he told me to go for it as you never know if you are going to be one of the lucky ones.

I was terrified before the first injection, wondering if I had a needle phobia or not, as I was so scared, but I just went for it. There was no other option for me. It was drugs or terrible bouts of illness every 3 months or so.

By that time, I was doubly incontinent and could only walk a few steps - shuffling along, as I couldn’t pick my feet up. Life was not good. I was numb below the waist and looked as bad as I felt.

18

This is something I’ve been thinking about a lot lately. Initially when I was told I qualified for DMDs, there was no doubt in my mind that I would accept the offer. However, over the last week or so I have been querying whether the pro’s outweigh the cons. I recieved my referral letter to the main neuro hospital yesterday (I was cc’d), having seen my local neuro a couple of weeks ago. I can’t help but feel he is trying to sell HIS case. He has confused the dates of my previous relapses again, even though I have corrected him on several occasions. He also refers to me as a ‘nice 26 year old lady’ - definitely not meant for me!

Most of my relapses have been OK to deal with, although two would have qualified for steroid treatment had I been correctly diagnosed. However this last one has taken over my life for nearly 3 months, two of which I could not work. I know for sure I do not want to go through this again, but there is also the chance I’ll have another 8 years of managable relapses…or is there? Is it down hill from here? I am under no illusions that DMD’s will not/are unlikely to stop any further relapses, but I can’t work out whether the side effects from them are worth possibly reducing my relatively low rate of major relapses. I’ve always been a ‘have a go, rather try and fail than not try at all’ kind of person, but this one has got me stumped.

It has also been highlighted that I might not be suitable due to my history of depression. From my reading I gather than MS and depression often come hand in hand. I also read that depression can be a big side effect of most of the DMDs. Well thats a bit of a bugger isn’t it! Maybe this should influence my decision, but it feels like a massive catch 22. Has anyone been refused DMD’s on these grounds?

19

Hi Traitsy,

I agree with you about Catch 22.

“Depression is a common part of MS”. “Oh, but you shouldn’t have X if you’ve ever had depression.”

I think the interferons have been most strongly linked with depression; Copaxone less so.

Therefore I strongly suspect that IF I’d said yes, I’d only have been offered Copaxone anyway, due to my history. In the great “Reduction of Cumulative Disability” debate, I believe Copaxone has shown to be the least promising, so I would have found that the least satisfactory to be offered - especially as someone who’s not had many relapses historically, anyway.

Nobody can tell you what to do. ALL drugs have pros and cons. What seems an obvious choice for one person might be much more finely balanced for another. Nobody else is YOU.

Tina

20

I didn’t refuse dmds on the grounds of depression, but I did refuse them on the grounds that my relapses were few and far between. But they got more frequent - I didn’t seek out dmds after this happened, on the grounds that going from 3 relapses a year to 2 (milder ones) a year, with no difference in my disability at the end of the year was not worth the hassle of injecting dmds.

This description of the effectiveness of dmds is still the one on the MSS website. I’m no longer sure it’s right - from what Karen says (above) the dmds are more effective than this, if you pick the right one.

There can be an effect on the dangers associated with tysabri - this has been lost in the discussion. But then again, I’ve been on tysabri for a year and a half and I’m going downhill as fast as ever, so I’m on a drug that is not dangerous for me but doesn’t seem to be effective for me either…

21

Thanks Tina, and Sewingchick. I am probably the most indecisive person I know. If I don’t know what to have for dinner, I’ll write the options on bits of paper, and put them on the floor. Which ever one the dog sniffs first, thats dinner! Clearly that isn’t the best way to make a decision as important as this! Before I started having doubts, I had pretty much decided that, providing the medical professionals were in agreement, I’d start on Rebif. Having spoken to others who have also said that the MS Decisions website while very useful, is a tad out of date on some information, I have done some more research.

I’ve currently got a bad case of brain fog. I can’t focus, concentrate, express myself (out loud), hold a decent conversation. My counsellor says that is because I am depressed. But is that because of MS, or just me, I don’t know? If I take Rebif, I could continue feeling depressed, and will then have three possible reasons for being depressed…OR could everything level out and I find a happy balance…I just don’t know.

On the other hand, I never seem to suffer the symptoms of medication, and am generally fit and well, no flu, colds and always had a cast iron stomach. So perhaps I’ll give it a whirl and see what happens.

Apologies for completely hijacking this thread!