The Pharmaceutical Journal
Vol 268 No 7188 p338-339
9 March 2002

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Multiple sclerosis

Pharmacists, who are also patients, describe in their own words what it is like to have to take a medicine for life

Living with multiple sclerosis: first hand experience is helpful

Some days I can, but some days I cannot so easily do those things I was always able to do before I developed multiple sclerosis in 1995 when I was 35 years old.

I never paid much attention to the symptoms I developed before diagnosis. Apart from taking the odd ibuprofen as suggested by my GP when I finally, after a couple of weeks, paid him a visit (and which certainly did not help), I continued trying to work. The loss of sensation in my feet slowly ascended up my legs leaving me with paraesthesia waist downwards. I gradually became unable to walk. After a month of struggling I was admitted into a local private hospital and after numerous questions, a lumbar puncture and an MRI scan I was finally diagnosed with multiple sclerosis for which I received the standard 1g methylprednisolone iv three-day treatment, which was then extended to five days.

I have relapsing-remitting MS.I guess I thought at the time there would be no further recurrence but after nine months I developed my first relapse which involved diplopia and loss of balance and nausea. Unfortunately, ever since I have had frequent relapses (nine in seven years) each of which require a short dose of steroid, formerly administered intravenously, but recently (due to change in consultant) taken as oral dexamethasone 16mg od for five days. I am now quite knowledgeable about the side effects of steroids. I know that, among other side effects, for the first night and possibly the second I cannot sleep, I will have an increased appetite and I will have mood swings which cannot always be explained.

Range of neurological problems

With MS, I find that a number of things can exacerbate previous symptoms for a while but I have found how insidiously and unpredictably a relapse can begin and progress. Because of each relapse I have now experiences quite a wide range of neurological problems and I am now rather more aware of the difference between sensory and motor nerve impairment. I have learnt how annoying or distressing they can be and generally how disabling they can be until they are understood, eg, burning pain, emotional lability and various other paroxysmal symptoms, and how best to treat them.

Through and because of this, I have or am taking an interesting range of medicines. Strangely, although I have dispensed a large number of tablets over the years to numerous people, I do not like having to take them myself. To date I have had steroids, ACTH injections, amitriptyline, cinnarizine, baclofen, citalopram, tolterodine, oxybutinin, carbamazepine, and various OTC preparations, and, since 1996, I have been taking azathioprine 100mg daily in the hope it would prevent relapsing. It obviously does not, so I am now questioning whether azathioprine simply prevents the severity of each relapse and whether or not to continue taking it. Both the consultants I have seen believe I should, since no better alternative is available. Medically, I am a prime candidate for beta-interferon. I can understand why the National Institute for Clinical Excellence cannot recommend it for therapy but now I would quite happily receive it in order to reduce relapse frequency and possibly prevent the leg discomfort I always experience, some days more severely than others.

Medicines not licensed

Several of the medicines I have been taking are not licensed for the indications for which they have been prescribed. I have always believed it important to give patient information leaflets to patients along with their medicines but I now also know it is important to give appropriate counselling to those for whom the indication the drug is being prescribed for is not listed on the PIL. It could be worrying to some patients when clear and concise directions are not written down.

Since I developed MS, certain relapses have prompted me into doing rather more relevant CPPE distance learning study, for example, Living Aids for People with Physical Disabilities and Incontinence

Although I am still ambulant I now find walking long distances difficult and sometimes make use of a wheelchair or mobility scooter. I have learnt how much I dislike having to use a mobility aid and how a person's attitude tends to alter slightly when talking with me, although doubtless I have been slightly guilty of doing that myself in the past. I find it helps when the other person sits down, allowing you to talk eye to eye. Another hateful thing is the realisation that, in order to make even day-to-day living easier, one may eventually need to make use of disability living aids. During one relapse the problem I had was directing my right arm — difficult when one is right handed. Simple things like cleaning teeth, washing and brushing hair, eating, writing, etc, which are easily done without thought,temporarily all became a challenge — though of course for some they become permanently challenging.

All these problems I have experienced have certainly improved my understanding, patience and compassion generally. First-hand experience really can help in some ways I suppose. Slowly becoming used to the unpredictability of MS and how much, in the long term, it takes away one's independence and reliability and alters any future plans one may have had regarding work (is one employable?), leisure, etc, certainly takes time to come to terms with.