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Stunned

Everyday living
#1

In July I was emphatically told that I have been injecting unnecessarily with Rebif for at least the last 3 years. I was diagnosed SPMS in 2009 and my new neurology department thinks I was probably secondary long before this.

Aug 2003 to July 2015 is a long time to be injecting, particularly when I have asked the question “Is this still ok to take or Is this still of benefit to me?” in the annual drug review with the neurologist.

Six years (2009 - 2015) at a cost of £6,000 per annum = £36,000. Imagine if this is happening in other places and the current NHS drug budget.

I am delighted not to be injecting and one month on, feel no different than before, although sick to my stomach at the thought of the cost to the NHS.

It makes you wonder how many compliant people there are in Britain who are aslo taking completely unnecessary drugs.

Comments welcome…

Cheers

Moira

#2

Hello Moira

i wouldn’t give it another thought to be honest. I have been using Betaferon for about 11 years and have no idea how many relapses it has prevented but if it is just one, I would do it all again. The same could be said for you, how many relapse did it avoid? I may well be SP by now, I don’t know as I don’t go through all the symptoms at my annual DMD check up, that’s not what I’m there for. I am there to ensure I can stay on it as I feel it is doing what it should.

I think for people on DMDs, whether or not the drugs are working is in most cases unquantifiable as who knows what would have happened without them? Betaferon is similar to Rebif and Betaferon (apparently £1000 per month) is also for SPMS so if there’s any remote chance of a relapse, I’ll keep injecting.

If there is waste in the NHS, and I’m sure there is, it’s not here!

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#3

Eh?

I’ve been SPMS for over 5 years now and neither I nor my Neuro ever understood there to be any medication to treat progressive MS (…but I believe ‘they’ are now working on it) ?!!

Have you been advised otherwise ? Has it been suggested to you that Rebif or Betaferon could actually treat SPMS, and if so by whom ?

Thanks,

Dom

#4

I have always been a bit sceptical about the concept of categorising one ‘type’ of M.S. as SPMS. (and posted about this occasionally)

A dx of SPMS assumes that every part of us that is affected by m.s or every part that may be affected in the future will follow a steady decline with no improvement.

That is someone with SPMS will never see any improvement anywhere.

It may well be that the OP has benefited from taking Rebif - it can’t be proved one way or the other.

#5

[quote=“liamsquash”]

Eh?

I’ve been SPMS for over 5 years now and neither I nor my Neuro ever understood there to be any medication to treat progressive MS (…but I believe ‘they’ are now working on it) ?!!

Have you been advised otherwise ? Has it been suggested to you that Rebif or Betaferon could actually treat SPMS, and if so by whom ?

Thanks,

Dom

[/quote] Yes most definitely by my previous neuro who prescribed it. And the MS nurse I had at the time. If your MS is active you can have relapses and Betaferon reduces the frequency and severity of relapses so why not? Google it, it’s not new. And its why I want to stay on it.

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#6

I think categorisation (as krakowian put it) is a much better term than DX when it comes to subtyping MS. SPMS is when there is continuing progression not directly stemming from relapses. There is usually a period when the disease phase is changing from classic RRMS to SPMS when there may be steady progression and relapses. Now under DMT the relapses should be suppressed so it’s a difficult call when to stop DMD. I’m rather worried in these times of cut backs and austerity and changes to how the spending is controlled (tariffs) that there may be incentives to cut prescription of drugs with dangers to patients. DMD is used to suppress relapses so if there is no evidence of disease, is it because of MS burn out or the DMD?

So there isn’t anything licenced (much less approved) for pure SPMS but there is for the RR part of SPMS+RR.

#7

I asked my neurologist recently how they can tell whether someone is RR or SP MS, he basically said its not an easy call as you can have SP with relapses. So if you still have relapses, it seems it’s better to have the label RR applied to you in order that the neuros can continue to prescribe DMDs.

#8

I think it is quite right that neurologists are not in a terrific rush to take RRMS/SPMS(?) people off drugs that are keeping their relapses at bay. I mean, why take a big risk if it is marginal? One thing is for sure - the longer to leave it, for safety’s sake, the more chance that they will make the right call - that relapses will be a thing of the past and that there will be no nasty surprises from that quarter. There is little to be gained for neurologists or for patients by jumping the gun with fingers crossed. OK, there’s a few quid in the game, and maybe that matters if one is a betting woman, but I’m not. Russian roulette isn’t my idea of a fun evening.

And think of the risks of the neurologist jumping in too early and getting it wrong! Stopping treatment while there remains a reasonable chance of the drugs catching potential relapses that are lurking in the shadows like burglars, waiting for the moment when the (pharmacological) security guards are sent home early, obligingly leaving the doors open behind them! It would give the neurologist a bad morning at the office, sure, but the impact on the patient could be awful.

Why take a big risk when you could, for the sake of a modest premium and a bit more needlework, buy some time to make the risk a small one?

Moira, don’t give the money thing a thought. You’re worth it.

Alison

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#9

36 grand? a nothing expense. a single day out for one royal family member costs considerably more.

this is chump change and no reason for concern.

if anything, i think you should feel glad to have been allowed to derive whatever slight benefit there is from such a drug, when most would have been cut off long ago.

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#10

I’m definitely still having relapses. For example, starting in May, I had six weeks of Trigeminal Neuralgia (agonising facial pain) which has now gone completely. A bit after this I had lots of bladder problems, now pretty much resolved. But over the last four years, while I’ve been on Tysabri, my walking has just been deteriorating quite steadily. So what kind of MS do I have? When I asked my neurologist, he said the labels RR and SP aren’t very helpful.

These days, I believe that the myelin damage to the nerves controlling my legs is so extreme that the nerves have started to die. My first MS symptoms, more than twenty years ago, were to do with my walking. I had a lot of bladder problems for about five years but I think the myelin sheath on the nerves to do with this has been repaired since I’ve been on Tysabri. The intermittent problems I get are relapses. I’m very grateful to be on Tysabri - I think my life would be a lot worse without it. I wish it had been available when I was first diagnosed.

This is all a long way of saying that, as long as you’re having relapses then it is probably worth being on a DMT that works to reduce relapses and progression.

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