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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 Unfortunately in February 2005 the drug was withdrawn worldwide due to fatal cases of PML (progressive multifocal leukoencephalopathy) in the United States.

 

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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.

Caroline Haynes

January 2008

 

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Case Study MS