The daughter of a former work colleague recently dx’d with m.s.
From what she tells me it looks to be ppms which of course means no?? drug therapy.
I’m tempted to suggest that she tells the neuro that she has experienced relapses and remissions e.g. an arm that was barely functioning some time ago has now recovered etc.
That is she er cons the neuro into believing she has RRMS which would give her access to various drugs which may possibly help - they certainly wouldn’t do any harm.
Can you tell me what the point would be of someone taking a DMD to prevent relapses if they don’t have relapses?
Disease modifying drugs all have the potential for side effects. There is not only no point in taking them if you don’t need them, it could literally cause this person damage. Your statement, ‘they certainly wouldn’t do any harm’ is uninformed and untrue.
Plus you don’t know for certain this person has PPMS. Surely the best way to have MS treated is to be completely honest with ones neurologist and allow him/her the means of treating you properly.
I think you are considering giving this person very bad advice. These are not little white lies, they are dangerous and will not do this woman any favours at all.
Sue
but wont DMD’s keep the m.s. at bay from the unaffected parts even if it is ppms?
The 28th March a new mediation is coming out for ppms
In my opinion, a lay person who thinks that they know more than a neurologist is deluded. Anthony
No they won’t. The point of the existing DMDs is simply to reduce the inflammatory process which causes relapses.
In PPMS there are no relapses.
Therefore a DMD which prevents relapses will not work on a person who actually has PPMS. Or in fact SPMS. Unless they have SPMS but continue to have relapses. Which is the reason why many neurologists keep a person officially labelled as RR when they’ve really become SP. But you should remember, the neurologists are doing this. They are not being ‘conned’ or treating someone irresponsibly. They have good reasons for what they do and they will stop prescribing once they see there is no value to the person.
In the past, I have taken 4 DMDs when I was RR. I experienced severe side effects from three of them:
Avonex caused very bad cognitive problems. This was in 2002. I did not at that point have any cognitive problems. I did not recognise the side effect for 4 months. In that time I was confused by so many things. I did my job very badly. I was confused by the symbols on my cooker. No it wasn’t actually dangerous to my health, but did me no good whatsoever.
Tysabri gave me severe hepatitis. Fortunately, the liver is a very resilient organ. It recovered.
Tecfidera gave me Lymphopenia. This is fairly common. It reduces the white blood cells that fight viruses. It recovered within a year. Very low lymphocytes leave a person vulnerable to any viruses they encounter.
Only Copaxone did not give me bad side effects. Only Copaxone did the job of fighting relapses. Eventually it stopped working and I suffered a number of severe disabling relapses. I am now a full time wheelchair user.
There are many other serious side effects possible from other DMDs. There are people who have died due to side effects. People who have become badly disabled by side effects. Many DMDs require a consent form to be signed in which you state that you accept the possibility of severe side effects. They are not drugs to take lightly. And they are certainly not drugs which a person should take for the sake of it.
And advising a person to deliberately lie to a doctor is irresponsible at the very least. When someone is recently diagnosed with MS, they are living with new symptoms, a potentially frightening prognosis and they may well accept the guidance of someone who they assume to know the best thing to do.
This is obviously my opinion, you should do as you think best.
Sue
Sue’s right: bad plan. Really, really bad plan
Anon: your friend and her/his daughter have enough problems without ill-informed, foolish and potentially disastrous meddling making a bad situation worse.
Alison
Is this a wind up Anon? All drugs are potentially dangerous, taking them without a founded reason is downright stupid & irresponsible. Are you a medical practitioner?! Leave well alone & let the experts do their job. Your suggestion is dangerous & idiotic.
To a degree ppms is a differant illness to r rms.
We should all be completely honest with the docters some off us hold stuff back
Before my wife saw the first Neurologist i didn’t really understand about so much about the relapsing/remitting bit and was worried as she had been left with bad mobility which hadn’t really got better over several monthsthat i thought she would be classed as progressive, we understood more after the appointment after he drew us a graph thing explaining the relapses and partial recovery against a normal no problem line.i think if its borderline they would tend to say RRMS until evidence points other way?
We were worried but never crossed our minds to start lying to the Docs!
DMD’s have never been trialled on people diagnosed with ppms or spms.
The Barts Blog commented on the Ascend trial today. “The ASCEND trial was a large international trial which asked whether natalizumab (tysabri) has an effect on disability in the progressive phase of the disease. We knew already from the AFFIRM study that natalizumab is really effective for both relapses and disability during the relapsing phase of the disease.” Multiple Sclerosis Research: #Thinkhand - Natalizumab preserves upper limb function in advanced disease
Dear anonymous, if your friends daughter is progressive, big big hugs. But… We are not neurologists. Forget the ‘lies’, and focus on, real accurate info. It could be a long relaps, or it could be damaged caused by a relaps not ‘recovering’.
Its really really important that the experts have all the info !
Big hugs, it’s scary when people you care about find they have this. P.s. Hope it turns out not to be ms
I think lying to the neuro will only do a disservice to you and quite frankly other Pwms. Whilst I really do get frustrated with the whole process, I would not contemplate lying. Completely agree with all the other posts. When people start lying trust is broken and that does no one any good.
The neuro will be able to tell from the MRI scan - so it’s not a great start to the doctor/patient relationship if your friend’s daughter is caught out in a blatant lie on the first visit - not really advisable.
You can’t, er, con a neuro, as they have far more knowledge of this than you can hope to dredge up from Dr Google. It would be like trying to, er, con your GP that you’re diabetic - you can’t fake it - and what would be the point? To get a drug that won’t help?
DMDs aren’t prescribed to progressives because the neuros are just mean, you know!
The main reason you give as to why my friends daughter shouldn’t try to convince her neuro that she has rrmss so that she can get a dmd is that these drugs are dangerous, have severe side-effects and may not work etc. But hold on, were someone to say that despite being rrms they didn’t want any dmd they would be castigated and told by others that they were wrong. However effective/ineffective a dmd may be the side effects ae the same. (of course if the m.s. is ‘slowed-down’ then the side-effects may be worth it) The purpose of a dmd is to reduce the inflammatory process. In rrms this process is intermittent, in ppms/spms the process is continuous. But it’s the same process. So why not give everyone the dmd.
First of all, if a person with RRMS chose not to take a DMD because of the side effects, they would not be ‘castigated’. Quite the reverse. Side effects from DMDs are serious and it’s a cost/benefit decision in every case. Each individual has to decide for themselves whether the benefit is worth the cost. And the inflammatory process is not the same in progressive MS. If it were, the DMDs would work. And they don’t. With the potential exception of certain drugs like Ocrelizumab which it appears is a bit effective for people with PPMS. But NICE have it seems got the idea that it’s insufficiently effective in PP. so it’s likely to get a license for RR only. We are (in the main) not scientists, not neurologists. We can’t say ‘oh the drugs don’t work on progressive MS, or not as well because …’ . But we have to just accept it, the inflammatory process is different to that in RRMS. We can complain, as we do, that not enough research is done into progressive MS. And complain, again, as we do, that drugs which are less effective for progressive MS are not being given the go ahead by NICE. But a DMD which works for people with RRMS but not for PPMS is worse than useless if taken by that person with PP. it almost always come with side effects. As do all drugs. And again, as I think you can tell there is a consensus amongst us all (apart from you Anon), that lying to a neurologist, is a bad idea, and likely to be demonstrably a lie to the neurologist. So advising someone who is diagnosed with PPMS to lie to their neurologist is idiotic and potentially dangerous, even if only in terms of that persons future relationship with their neurologist. By the way, you began by making a statement about your friends daughter, that ‘it looks to be’ PPMS. Unless she is honest with her neurologist, s/he won’t be able to believe a word she says. And at the present time, she’s not been diagnosed with PP. In general, people are not assumed to have PPMS from the outset, unless there is overwhelming evidence that suggests to the neurologist that it is PP. So, by being honest, the neurologist may well initially diagnose RR and offer her a DMD. You may be arguing for something utterly unnecessary. Sue