April Comments from the Unrelated blogger link have been moved here
I would like to know at what point does a
patient with severe symptoms of PPMS get admitted to hospital for
treatment or recovery in the UK? I am familiar with a case where there
might be a danger of irreparable axonal loss as treatment is being
delayed (for reasons unknown to me). This patient is rapidly
deteriorating with little hope of quick help. I am asking this because
being German and benefiting from the German health system, Doctors in my
country have asked me why treatment for this patient is being delayed.
According to the little research I have done, it seems to be vital to
stop axonal loss. I am looking forward to your views on this.
Re: "I would like to know at what point does a patient with severe
symptoms of PPMS get admitted to hospital for treatment or recovery in
We rarely admit MSers to hospital in the modern era.
Hospital are dangerous places, particularly in the era of severe and
sometimes untreatable hospital acquired infections. The exceptions
being; (1) severe and disabling relapses and the MSer is not coping at
home, they would then come in for steroids and to be assessed by the
rehab team; (2) severe infections; (3) to have pressure sores managed;
(4) bladder and bowel surgery; (5) insertion of a balcofen pump; (6)
day-case for starting fingolimod and natalizumab infusions.
from these obvious exceptions MS is almost exclusively an outpatient
disease. I am aware that in Germany hospitals and neurologists often
only get reimbursed for inpatient care, which is why a lot of MSers get
admitted in Germany. The latter is due to the perverse incentive created
by reimbursement. In the NHS these incentives are minimised.
we don't have any DMTs licensed for PPMS; if only we have. All we can
really use with any confidence is best supportive care. We have some
evidence that in young PPMSers and in those with active MRI scans that
they may benefit from anti-CD20 therapy. As this is expensive and
unlicensed we would have to make a special request to the MSers PCT
(primary care trust) to pay for the drug.
Many thanks for your very quick reply, Prof. Giovannoni. I
agree,hospitals are a very bad place to be these days. No doubt, there
are perverse elements in every health system, be it in Germany, France
or the UK. But I was not referring to abuse but was rather interested to
see what the chances/treatments/offers are for patients with severe
symptomps of PPMS in the UK. May I ask you if FINGOLIMOD (Gilenya)is
being tested on patients with PPMS?
At the moment sativex is available in some countries for the treatment
of pain and spasticity, if you can get your PCT to fund. However in
addition to symptom control there is a theorectical possibility that
cannabinoids can have some beneficial effect on progression both PPMS
and SPMS. There is a three year trial called CUPID that is testing a
component of cannabis tetrahydrocannabinol).
This is fully recruited has been going on for the past 3 years and
is due to report the results this year
If this is positive you have the first drug for progressive MS. There are pharmaceutical versions of this called marinol.
positive effect would be a slowing of progression and also possible
symptomatic benefit and the negative effects are those associated with
cannabis intoxication and cannabis use. Driving risksetc. The triilas
will provide information on this.
Sativex is available on prescription in Germany since 2011. Can doctors
collaborate on this across EU borders, i.e. if a German doctor
prescribes the medicament, could a British neurologist do the
Sativex is available in a number of countries in the EU, however within
the UK things are very patchy. I understand from GW Pharma that Sativex
is selling like space cakes..sorry hot cakes in Germany.
issue is not if German doctors could prescribe and it could be
monitoried in UK, it is a question of who pays for the drug. Is it work
insurance, national health service, private funding. Each country has
However, there is an interesting ethical issue
here because there clearly are big differences in access to health care
in different EU member states, should it not be universal. This is a
question for the Eurozone and other Governments
Thank you for all yr Swift comments.
Access to Health care in the EU should be harmonized, I agree.
of sativex aside, let's assume costs were legally covered through a
German prescription, would it be legal for a UK neurologist to treat
patient who brings along medication? I am trying to think about
different approaches for unusual illnesses which are subject to
complicated national legislations.
Not being a neurologist I can not comment with any authourity, maybe G will, but it would create issues I am sure.
could be using the drugs outside the scope of its licence if it is not
approved. Drugs can be conterfeited and so the neuro has no way of
determining quality control if they do not know the source.
it is happening all the time, I suspect because large numbers of MSers
are self medicating with a variety of supplements and the neurologists
would not know where the supplements come from. However I doubt that the
nueor would administer the supplement
Not sure where to post this as first time. I have PPMS I amconcernerd
about the relationship between Vitamin D deficiency and MS as my 11 year
old daughter has had Vit D level of 14. She had difficulty walking and
has now been treated with 4000u/day for four months. No follow up blood
test has been done and we were told to give her over the counter
vitamins which only contain 400u. The Rheumatologist said there was no
link between Vit D deficiency and MS. Should we give her a higher and
long term dose.
Re: "Is FINGOLIMOD therefore not available for PPMS patients who are not on a trial? Does this apply to the whole of the EU?"
is correct; only 50% of MSers in the trial with PPMS are getting the
drug. Outside of trials would require a neurologist to prescribe it off
license; this would be very difficult in the UK as the PCT/Commissioners
would not pay for it.
Re: "I amconcernerd about the relationship between Vitamin D deficiency
and MS as my 11 year old daughter has had Vit D level of 14. She had
difficulty walking and has now been treated with 4000u/day for four
months. No follow up blood test has been done and we were told to give
her over the counter vitamins which only contain 400u. The
Rheumatologist said there was no link between Vit D deficiency and MS.
Should we give her a higher and long term dose."
You should refer
your daughter's rheumatologist to the literature on MS and vD.
Regarding what dose to give; 400U will not be enough to make your
daughter replete. She will need her levels checked and the dose
increased as appropriate. There are clinical reasons not to give vD
supplements therefore this decision needs to be taken with all the
information on the table. I therefore can't make specific
Population and genetic studies are confirming the link
between multiple sclerosis and vitamin D, says Richard Ransohoff in an
article published recently in Nature ( 484,S8(12 April 2012). I suggest
you refer you refer your rheumatologist to the article so that they may
better educate themselves!
Re: Sativex. Great news! Thank you very much, prof. Giovannoni. That was
my thinking as well; that it could have positive reverberations on the
UK decisions if German prescription helps the patient. Is Sativex an
ad-on medication for PPMS which works with other main medication or
could it work as THE main medication itself?
I must say, as someone with PPMS, I find it sickening how unhelpful
consultants are when it comes to trying out new ideas and thoughts
regarding drugs like Sativex and Fampridine.
Prof G, when you
start trialling the new drugs to treat progressive MS, how long do you
think it'll take for NICE to agree to give it to us? What date/ year do
you have in mind?
Let's say the new trials prove fruitful, will
you be monitoring progress throughout? In that case, if the drugs prove
useful, can you demand that the trials be cut then short and the drugs
Prof G can answer when he gets up he's on US time, but each drug trial
is its own beast, what you think is plain sailing often isn't.
new drugs it will be the same long process, but for some of the others
we have in mind they are prescribable for say elipesy and some aspects
of MS already, so one would not think that long.
The length of
time depends on the trial design if you saw the video of Prof Gs new
idea this can cut a seven year process down. I know this is being cagey
but there is no point in giving dates that we have no way of
In any trial there is interim analysis notably for
safety issues but if a drug is obviously working so well they can be cut
short on ethical grounds.
Fast tracking is interesting tysabri
was fast tracked and then PML came along..so the regulators become more
caustious. There is the regulatory machinery to do this.
Mouse Doc, have you been watching Louis Theroux’s “Extreme Love” season
on BBC 2? He explored the subject of autism and dementia in two separate
documentaries. The series has been both touching and, at times, very
heartbreaking. What is for sure is that neurological ailments are a
serious global issue.
There are approximately a billion people in
the world with some kind of neurological illness right now. Very little
can be done for these people and the cost to society is overwhelming in
economical terms. Furthermore, Theroux’s documentaries revealed that
the people who suffer the most are immediate family members, the
partners and children of sufferers.
Neurological ailments are a
serious problem affecting both young and old people. There needs to be
some kind of concerted thinking. Do you think that people like you, as
in MS scientific researchers, can learn and share information with
scientists working in the neurological field of say dementia or motor
neuron disease? How closely associated are neurological disorders? What
is the reality?
Yes we do indeed learn from
other conditions, and that is what G is doing at the moment. We dont go
to just MS meeting to me MS scientistists, but there are neurology
meeting like the one G is attending so you learn about other diseases
and then apply the knowledge to MS. You read papers of things occurring
in other conditions. Some of ideas drugs for progressive MS say come
from looking at motor neuron disease.
Some diseases have
different causes but the end results are similar. For example a cell
dies in one of essentially two ways it explodes or collapses in on
itself. However there are many causes of cell death.