Becoming an Expert Patient - article 4: Medications & staying in control

When you have a chronic condition that means you need a variety of different medications, and sometimes a number of medications at once, it can be easy to feel that you are losing control of what is happening to you.

Whether you take paracetamol on an occasional basis, or strong opioids on a daily basis, it is likely that at some point, you will need some help from medications. Part of becoming an expert patient is learning what you need to know to ensure that you can take medications and stay in control.

In this article we discuss:

1. Who to Discuss Medications with

2. Where to go for more Information

3. Some hard truths about Medications

Who to Discuss Medications with

The doctor who prescibes you a medication is the obvious first place to get information. At the very least, you should find out from this doctor what the medication is being prescribed for, why they have chosen this particular medication, when and how you should take the medication and whether you need to come back to discuss your progress. Ask about side effects and how long the medication should take to kick in, but some doctors are not very knowledgeable about the individual side efefcts of medications and you may be able to get more information either yourself or from your pharmacist.

If the doctor who prescibed you a medication was a specialist, then talk to your GP if you have any questions or concerns about the medication. Remember though, that presumably you saw the specialist because they had more specialised knowledge than your GP, so it is possible that your GP will not be familiar with a medication or with its use for why you are taking it.

Pharmacists are often helpful people to discuss medications with. They may have more information about the medication to hand, especially about side effects, as medications are their speciality. Always using the same pharmacy has the advantage that they should have records of everything you take and so can more easily check for interactions between your medications. Many pharmacies now offer medication reviews to patients where they can check and discuss your medications in more detail.

Support groups, whether online or in real life, may let you hear about other patient's experiences of the medication you have been prescribed. However, you do need to take into account that people who have had bad experiences are likely to be more vocal than those who have had neutral or good experiences, and so you may not get a balanced view. If talking to other patients causes you concerns about the medication, discuss these with your healthcare team. You may have nothing to worry about.

Where to go for more Information

The patient information leaflet that comes with medications can be extremely useful. If one has not been supplied with your medication, just ask the pharmacist to give you one. When starting a new medication you should always read the patient information leaflet as they are a good source of basic information about the medication.

The internet has opened up the possibilities of finding out about medications. However, you do need to make sure that you stick to reputable sites. Using a search engine can be useful if you cannot remember a good website to go to, but something as simple as mis-spelling the medication name can cause you to only find less reputable sites, which may give you unhelpful information. When using reputable sites, you do have to be aware that they only publish accepted information, so if the medication hasn't yet been licensed for use for the condition you have got it for - and Fibro does not yet have any medications licensed for it in the UK - then that condition will not be listed as a use for that medication.

For information on what medications are used for Fibro, we recommend the FibroAction website and the NHS Choices site for evidence based information.

fibroaction.org

nhs.uk/Pages/HomePage.aspx

Patient.co.uk is one of the more useful UK sites for looking up medications and their medicine database is often useful. Being a UK based site has the advantage that the common names of medications will be what are used by UK GPs and that medications that are licensed in the UK, but not the US, will be listed.

patient.co.uk/

The British National Formulary (BNF) is the book that healthcare professionals use to look up medications and the medication information is now available online. However, it often doesn't provide much in-depth information and the online version can be complicated to use.

Medicinenet.com is a good USA based site with a comprehensive Medications database, as well as databases of Diseases and Conditions, Symptoms and Signs and Procedures and Tests. If you search using the generic or medication name, then confusion because of the differences between UK and USA brand names will be avoided. However, there will be the occasional medication that is licensed in the UK but not in the US. Note ~ to access the full Medicinenet.com site, you now have to opt to go to the US site, not the UK WebMD site run with Boots.

medicinenet.com

RxList.com has far more in-depth information about medications than most other websites. Although some of this information, such as the chemical composition of a medication, may not be of interest to many people, the detail given about side effects, drug interactions, warnings, precautions and contrindications is excellent.

Note ~ to access the full RxList.com site, you now have to opt to go to the US site, not the UK WebMD site run with Boots.

rxlist.com

When looking for information about medication interactions, Drugs.com provides an easy comparison tool. You select medications from a list, add them to an interaction list and then click Check Interactions. Although this shouldn't be relied upon as being 100% accurate - it doesn't allow you to add in conditions or foods for example - it can be useful.

drugs.com/drug_interactions...

Some hard truths about Medications

Remember that all medications - and, in fact, many supplements and even some complementary therapies - have potential side effects. Many of the side effects of medications tend to be worse when you first start on a medication, so if you try a medication or other treatment and get some side effects, do not immediately dismiss that medication or treatment as an option, but instead discuss your concerns with your healthcare team. It may be likely that the side effects will ease with time or there may be something you could do or take that could help. You may also want to start one medication at a time, even if it’s just a short time - like a few days or a week - apart. Do not stop medications without discussing this with a doctor first as there are withdrawal issues with some medications.

Some medications can take quite a long time to kick in and you have to be patient. Ask your doctor or pharmacist how long the medication usually takes to kick in, but for some medications, such as anti-depressants, this can be up to 4-6 weeks. If you do not see any effect at first, be patient and give it time. If, however, after more than a month you are not noticing any effects, then go back to the doctor that prescribed the medication.

Other medications need to have their dosage increased slowly and this can take some time. Discuss with your doctor if this will be needed and decide on a plan of when you will increase the dose and by how much. You may also want to discuss whether you can increase more slowly if you get side effects, particularly if you cannot get a follow-up appointment with that doctor at short notice. You may need to be very patient, but it is likely that, if you have to increase the dose slowly, that this is for a good reason.

Checklist for New Medications

When you start taking a medication, as an expert patient, you should know:

* What you are taking the medication for.

* Why you are taking that medication instead of another medication.

* When and how you should take the medication.

* What side effects are likely and are there any side effects to watch out as they could be dangerous.

* If you get side effects, are they likely to ease off. And what, if anything, you could do to reduce side effects.

* Is there anything - such as driving, climbing ladders - that you should avoid doing until you know how you react to the medication.

* How long the medication is likely to take to kick in.

* Whether the medication is likely to interact with any other medications you take.

* Whether the medication could interact with any supplements, food or drink you take.

* If you need to come back to discuss your progress, and if so, when.

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