Equipping People To Make Sense Of What They Are Told
Caroline Haynes
MS Case Study - I was diagnosed with Relapsing Remitting Multiple Sclerosis at the
end of 2001 aged 37.
Throughout 2000 and 2001 I'd had what I now know were 3 severe relapses involving
poor mobility, loss of balance, incontinence, numbness, depression and mood swings.
Six years earlier I'd had optical neuritis which had left me with blurred and double
vision - but as I didn't know that had been a relapse I just thought I was getting
old and needed glasses !
Early in 2002 my Consultant offered me the chance to join Phase 111 of a drugs trial
being carried out by Kings College Hospital, London for a new drug for Relapsing
Remitting MS called Tysabri. At first I was reluctant to even read the information
sheets (and there were plenty of them!) - it was too soon, I wasn't prepared to
make such a commitment, I wasn't ready to accept the fact that I had a disease that
needed treatment - and I was still learning how to spell 'Sclerosis' ! However, I
read and re-read the information, talked with my Consultant, listened to the opinions
of the those I trusted and valued most - and decided to go ahead and commit to the
final phase of this trial.
Three months after starting the trial I realised that I was feeling so much better
– all the irritating painful symptoms associated with MS (numbness, sore joints,
pins and needles, sensitivity, burning sensations) had lessened in severity and reduced
in frequency. It was an easy drug to take – every 28 days I would go to Kings for
an intravenous infusion administered by a Nurse which took 2-3 hours. From the little
I knew about other drug therapies I was so grateful and appreciative that I didn’t
have to inject myself.
For 2½ years I continued successfully and happily with Tysabri remaining stable,
relapse free and confident. Unfortunately in February 2005 the drug was withdrawn
worldwide due to fatal cases of PML (progressive multifocal leukoencephalopathy)
in the United States.
Tysabri had been taken together with an interferon in the United States but not within
Europe. After vigorous safety checks Tysabri was re-introduced in November 2006 and
I was delighted to re-start the trial as during the 18 months without Tysabri I had
had 2 disabling relapses which had left me with restricted walking so that I am now
dependent on a stick. Other people also on the trial had suffered relapses during
those 18 months without Tysabri and we were all praying that it would one day return.
I have continued with Tysabri to this day and continue to be stable and relapse free.
The positive effects of Tysabri, for me, far outweigh any negatives. It is admittedly,
at the moment, a costly drug (£1300.00 per month) plus extra costs for having the
drug administered whilst under supervision within a Hospital and I understand that
at present certain PCT’s are reluctant to fund it – you really do have to fight for
it.
There are recorded side effects such as UTI’s, fatigue, headaches, flu like symptoms,
infusion reactions and hypersensitivity. I suffer a bad headache 3 weeks after the
infusion for which I need to take strong prescribed painkillers but I think this
is a small price to pay for such an improvement in my quality of life and I call
Tysabri “My Quality of Life-Line”.
As you well know, MS is a treacherous disease with a host of debilitating symptoms
and you cannot put a price, nor place greater emphasis, on a relapse free period
which is what Tysabri offers (it can reduce your relapse rate by 69%).
It is not for all and at present it is suitable only for those with highly active,
rapidly evolving severe Relapsing Remitting MS.
