Chapter five
DRUG THERAPY
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Chapter fiveDRUG THERAPY |
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Maximising benefits and minimising risks
Choosing drugs
Drugs checklist
At the pharmacist's/chemist's
Reducing prescription costs
Other medication tips
Ways of remembering to take your drugs
Warning cards and MedicAlert
Injections
Suppositories
Specific drugs
The 'postcode lottery'
Other sources of information
As yet, alas, the magic cure hasn't been found, but while we wait impatiently there are many different drugs the doctor can choose from to help us control pain, inflammation and stiffness, and make life more bearable. Different treatments work for different people at different times, so the first drug you try won't necessarily prove to be the most effective one for you and your unique body make-up. Don't despair. Persevere at working with your doctor to produce a tailor-made treatment. Try to be (dare I say it?) patient.
More about specific drugs later. First, some general points. A 'drug' is basically any substance that can alter the structure or change the way the body normally functions. Changes can be beneficial or harmful, or a mixture of the two. 'Drugs' used in medicine are intended to be beneficial. Some people place too much faith in drugs, others go to the other extreme and reject their help completely. However, used with care and respect, the right drug can keep you going and make life liveable again. Why make life more difficult than it need be?
Drugs alone won't solve all your problems. It's important to remember that drug therapy's only one item in a much larger 'Outwit Arthritis Kit'. The Kit should include non-drug pain control too, eg the right balance of rest and exercise, joint protection, control of body weight, pacing and planning of activities, keeping yourself occupied. 'Simple' traditional remedies such as warm-water bathing, or using a walking-stick to relieve pressure on a tender hip are examples of Kit items which may be just as effective, and sometimes more effective than a drug. Even if you have to take some drugs, these non-drug measures can help you keep drug dosage down with maximum benefits. (See also chapter 11)
Stories about serious unwanted drug side-effects ('adverse drug reactions' — 'ADRs') can be worrying, but need to be kept in perspective. As Dr Dudley Hart points out: "Remember that any medicine, whatever its virtues, also has the power to do you harm" (In Overcoming Arthritis). For every patient with arthritis who develops a problem with a drug there are many others who've benefited.
It surprises many people to learn that even 'alternative remedies', bought in health food shops, can cause unwanted side-effects, sometimes serious. You can even overdose harmfully on the usually very healthy carrot! Drugs bought over-the-counter or that we've been using for centuries have their risks too. The familiar aspirin, originally derived from the willow tree, is very powerful, potentially even harmful, but used as prescribed, with care, can be beneficial too.
Even a cup of tea or coffee is a drug. Both contain caffeine, one of whose side-effects is to make you want to pass urine more frequently. Caffeine's also a stimulant — keeps you awake and alert — so don't complain about insomnia if you've been drinking coffee before going to bed! Not all side-effects are unwanted. Many of us actually like the side-effects of a drop or two of alcohol. Some side-effects turn out to be unexpectedly beneficial. Anti-malarial drugs unexpectedly turned out to be effective for some rheumatic disorders, for instance, so did gold, originally used for treating TB.
Since the thalidomide tragedy of the early 1960s, testing and regulation of new drugs has been tightened up though inevitably not all side-effects come to light before a drug is approved for public use. My personal preference is always where possible to go for a drug that's been in use for some time, where the risks are more likely to be known, and I try to find out all I can about it from a reliable source.
As with so many things in life (crossing the road, driving a car, for instance) taking drugs for a rheumatic disorder is a calculated risk. Do the benefits outweigh any risks? Many side-effects are minor, and you and your doctor may decide they're worth living with for the sake of the benefits. It's also a question of ensuring everyone concerned (manufacturer, doctor and patient) is each doing their bit to minimise risks. I hope this chapter will help.
You, the patient, your GP and/or specialist each has a part to play in working out what's best for you and your unique body. It's essential that your past medical history, any allergies, any previous adverse drug reactions, your general health and habits are all taken into account. The doctor will also look at any other drugs you're already taking, to avoid harmful interactions, since many drugs don't mix well together.
It's your responsibility as well as the doctor's to make sure that everything important is taken into account, especially if you're seeing a different doctor from normal, as often happens. Don't take it for granted s/he's read your medical history thoroughly. Don't be too scared or over-awed to say anything. Much better to say you've got this or that allergy, or past liver disease, or are taking the contraceptive pill, or whatever, than to assume the doctor's done all the homework and thinking for you.
Mention any over-the-counter or alternative medicines you take too, for instance for colds, headaches, travel sickness, anti-malaria (on holiday), etc. Just because drugs are easy to buy doesn't mean they're free of possible side-effects, especially if mixed with other drugs. Someone with psoriasis, for instance, bought a non-prescription over-the-counter drug to prevent malaria when on holiday: it made him very ill.
Above all, if you're pregnant, or thinking of becoming pregnant, mention that too. You should not take any drugs (including alternative remedies) without your doctor's agreement, if you're pregnant, or planning a pregnancy. Some drugs for arthritis may have to be stopped before conception. And men too, please note — some drugs affect fertility, male and female. More information in ARC's leaflet Pregnancy and arthritis and the other information listed at the end of this chapter.
Be sure you understand certain basic facts about the drugs prescribed for you. Use the checklist below to make notes in your own Medikit notebook about each drug, and get the doctor to check what you've written is accurate. Include too the dates you started each drug, changed dosage, discontinued, or whatever; and any particular benefits or other reactions you noticed. Your record will help you, and will help your doctor and pharmacist, and any new doctor, help you too. Here's what you ought to know:
Remember, you can check drug queries with the pharmacist as well as the doctor, even on the phone if need be. S/he has had at least four or five years' university education and training and is an expert on drugs; make the most of that expertise. Pharmacies are gradually changing to encourage the public to make more use of them, and some have counselling areas where patients can be seen in private.
Some have a system of Patient Medication Records (PMRs) which list each patient's name, address, age, chronic illness, drug allergies and previous drug reactions, and medicines prescribed. Before a new prescription's dispensed the card is checked to avoid errors or potentially harmful interactions.
If, like me, you can't manage 'child-proof' medicine bottle tops, say so as you hand the prescription over. Screw tops, or the sort you can lever off with your teeth can be substituted. If there are children around though do make sure your medicines are kept locked away out of sight and reach. Draw a sad face on the label, so if they do get hold of a bottle by mistake the face reminds them how they'd feel if they take a taste.
Read the instructions carefully on the bottle or package, and the enclosed information leaflet. If you don't understand, ask the pharmacist to explain. For instance if it says 'one to be taken every six hours' does that mean 'every six hours, day and night'? Some drugs should be taken only with food and some only on an empty stomach. If you're not sure, ask. It's important, and one way of avoiding some side-effects.
If you run out of your regular drugs (eg on holiday in Britain) and can't immediately obtain a prescription, you can ask a pharmacist for an emergency three days' supply (five days if a public holiday's included), provided the drug's not on a controlled list. S/he will need convincing your need's genuine and you may have to pay the full price.
If you qualify for exemption, prescriptions are free. Even if you don't qualify, buying a 'season ticket', officially called a 'prepayment certificate' (PPC), can reduce costs if you need prescribed drugs regularly. Once purchased, it covers the cost of all your prescriptions for a set period, eg four months or 12 months. You apply using form FP95 (or EC95 in Scotland, FP95W in Wales), available from your pharmacy. Or phone 0845 850 0030 for information or to pay by debit or credit card. You can also buy online via the PPA website
People who qualify for exemption include children under the age of 16, anyone over retirement age, pregnant mothers and those who have had a baby during the past 12 months, people on a low income, or with certain medical conditions. Arthritis/rheumatic disorders aren't included, though might qualify you if yours is deemed 'a continuing physical disability which prevents [you] leaving [your] residence without help'.
Full information on who is eligible for help with healthcare costs, and which costs are covered, can be found in the leaflet Help with health costs (HC11), available on the Department of Health website, or by writing to Department of Health, PO Box 777, London SE1 6XH, tel: 08701 555455. Or you can call NHS Direct on 0845 4647 and ask them for a copy by post.
Ways of remembering to take your drugs and avoid mistakes
Choose the best system for you:
Warning cards and MedicAlert
If you're on certain types of drugs (eg steroids, anti-diabetic drugs, anti-depressants, sedatives, tranquillisers) or if you have a particular drug allergy you should carry a warning card with you. Some drugs can cause serious problems if combined with other drugs, or if you have dental treatment, or need any sort of emergency treatment. The card's a safeguard in case you have an accident, fall unconscious and can't explain which drugs you're on.
Some people wear specially engraved bracelets or necklaces giving details of their condition. Ask your pharmacist for details. You could register with the charity MedicAlert, email: info@medicalert.org.uk, tel: 020 7833 3034, freephone 0800 581420. Members wear a special bracelet or necklet on which their particular medical condition and membership number is engraved together with the Foundation's 24-hour emergency hotline number. Medical professionals can make a reverse charge call from anywhere in the world and receive information supplied by the wearer's doctor instantly.
Injections
"You know, we do take some prodding and messing around with, don't we? I sometimes feel like a pin cushion after the blood tests and gold injections!" So says Marilyn S, with feeling. She developed psoriatic arthritis in her 20s. Gold is usually given by injection into a muscle (intramuscular injection), etanercept is given by injection under the skin (subcutaneous injection), and infliximab is given as a drip into a vein (intravenous infusion).
However much you hate the thought of injections, try to avoid tensing the area being injected. Train yourself instead to relax it. Don't watch the needle going in. Shut your mind off from that area. Imagine a barrier sealing it off from the rest of you. Switch your mind to something pleasant instead. Plan beforehand what you'll think about.
Suppositories
Less likely to irritate the stomach than preparations taken by mouth, as they're inserted in the anus (though sometimes they may irritate existing ulcers via the blood stream). Make sure they stay in and don't pop out again (if they're put in back to front they may be retained better, was one doctor's tip!). Inserting them may be difficult for some arthriticky hands. Some drug companies have produced special inserters, so ask your doctor about these if you have problems.
Do read all the general notes above. They apply to any medication you take. Drugs come in a variety of forms: as tablets, slow-release ('retard') preparations, capsules, powders, granules, syrups, inhalants; or as externally applied creams, ointments or gels; or given as injections or suppositories. Whatever form they come in, all have to be treated with the greatest care and respect, to maximise benefits and minimise possible problems. Always read, understand, and follow instructions carefully.
There are two main ways in which drugs used to treat inflammatory arthritis like RA work. (1) by controlling the symptoms of your disease, symptoms such as pain, swelling and stiffness. These include painkillers and non-steroidal anti-inflammatory drugs (NSAIDs). (2) by trying to alter the progress of the disease itself. These include disease-modifying anti-rheumatic drugs (DMARDs) and corticosteroids (steroids), and the newer anti-TNF biologic therapies. Some drugs may work in both ways.
Different combinations may be tried to find the most effective for you. Approaches differ according to the specific rheumatic disorder and individual patient. Be guided by your doctor.
Regular blood tests or other checks are needed for some drugs, so they can be stopped if necessary before a serious side-effect occurs. For instance, several drugs used in the treatment of rheumatoid arthritis (such as azathioprine, gold, methotrexate, penicillamine and sulfasalazine) can affect the blood, and people on these drugs need to have their blood checked regularly. For gold and penicillamine regular urine checks are needed, and for methotrexate a regular blood sample is needed to check the working of the liver.
NO INFORMATION IN THIS BOOK IS INTENDED TO BE A SUBSTITUTE FOR YOUR PRIMARY SOURCE OF EXPERT INFORMATION, WHICH IS YOUR DOCTOR.
The anatomy notes in chapter 2 and those on pain and pain control in chapter 11 may help you understand how the drugs work in your body. Rather than go into detail here about specific drugs, I'll refer you to sources where you should be able to get up-to-date information written by experts. These give reasonably dejargonised descriptions of individual drugs, and include possible adverse reactions, special precautions, and dosages.
Do look at these two general booklets, both well worth reading:
Both booklets go into detail about the four main types of drugs used for rheumatic disorders:
"In outline, current evidence supports early aggressive treatment with single or combination DMARDS and, if they fail, biologic agents such as anti–TNFa in order to prevent joint damage. For full details refer to SIGN (Scottish Intercollegiate Guidelines Network) and BSR (British Society for Rheumatology) guidelines [for rheumatoid arthritis, ankylosing spondylitis and psoriatic arthritis]." (Standards 4-9, rationale viii)
The National Rheumatoid Arthritis Society (NRAS) has produced a clearly written summary leaflet Ask about your medicines for rheumatoid arthritis, downloadable from the NRAS website. There, too, in the 'Medical Information: on-going management' section are a very helpful 'drug directory' and 'drug updates' — detailed information written by rheumatology consultants and other healthcare professionals.
NRAS's Chief Executive, Ailsa Bosworth, has encouraging words about drug treatments for rheumatoid arthritis:
"The good news is that although we don’t yet have a cure for RA, medical knowledge about how the inflammatory process works and how to control it has increased substantially and there is an enormous amount of research going on as to how to target individual parts of our immune system with special biologic drugs, the advent of which in the form of Anti-TNF treatment, has simply revolutionised the treatment of people with this disease. We have also learnt a lot about how to use disease modifying drugs like Methotrexate (the Gold Standard) much more effectively, at higher doses than years ago and all this means that it is now more possible than ever before to get your disease under control and enjoy a better quality of life."
ARC produce factsheets about specific drugs. The generic name comes first, with some brand names in brackets:
For more about arthritis-related drugs not named here, look at the other information dealing with specific disorders produced by ARC, Arthritis Care, the National Rheumatoid Arthritis Society and the other support groups named in chapter 3.
If you have been recommended for anti-TNFa biologics, and meet the NICE criteria guidance, yet have then been refused access to the drugs due to lack of funding, NRAS want to hear from you:
"Please write to us, email us or call us if you have been put forward by your consultant for anti-TNF treatment but have been told you cannot have it at the moment due to funding restrictions. We can write to the Chief Executive of the PCT (Primary Care Trust), your local MP and other key organisations to remind them of their legal obligation to provide treatment in accordance with NICE guidance. At some point, someone being denied treatment is going to go to judicial review and when that happens they will have the support of NRAS and many frustrated and dedicated rheumatology health professionals who simply want to provide the best care for their patients."
Look too at eMaxHealth's article ('Arthritis Pain Treatment') reporting on research in the journal Rheumatology (October 2006) into this postcode lottery scandal, and quoting Dr Lesley Kay, a member of the British Society for Rheumatology Biologics Register (BSRBR) management committee:
"The BSRBR urges the Government and primary care trusts to put an end to this patently unfair situation, which is in direct contravention of government policy. The postcode lottery continues to operate, even though NICE aims to stop this happening. It's unfair on patients with these devastating, painful and unglamorous conditions to be forced to take a low priority and to be deprived of this very successful treatment."
"Randomised clinical trials have shown anti-TNF therapy is highly effective in the treatment of rheumatoid arthritis, juvenile idiopathic arthritis (JIA), psoriatic arthritis (PsA) and ankylosing spondylitis (AS). Not only can it arrest the progress of the disease, preventing deformity, but also patients report considerable improvements in symptoms such as joint pain, swelling, mobility and fatigue, and often say that the treatment has made them feel well in themselves for the first time in many years." ('Patients' perceptions of treatment with anti-TNF therapy for rheumatoid arthritis: a qualitative study' by N J Marshall, G Wilson, K Lapworth and L J Kay, Rheumatology 2004)
You could also look in a library at books produced for the medical profession, but do beware of (a) baffling and scarey medical jargon and (b) immediately imagining you've got all the symptoms described!