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FAQs

Everyone has questions regarding their RA and RA treatment. Your rheumatologist or nurse will be able to help you, but some answers to commonly asked questions are outlined here.

Q1. I find it difficult to be completely honest with my rheumatologist and feel like I’m suffering in silence. What can I do?

Telling your rheumatologist that you are finding treatment tough can be daunting and, as a result, your feelings can remain unspoken. However, to get the most out of treatment it is important you have an open and honest relationship with those who treat you. Your rheumatologist wants to help you control your RA and keep you as healthy as possible; problems with taking your medication can impact your health and so it is important they know if you are having difficulties.

Using the TRACK Diary can be a helpful way of showing your rheumatologist how you have been feeling and can even be a convenient way of raising the problems you are having with your medication. Speaking openly with your rheumatologist can also be made easier by considering beforehand exactly what you want to say and what you need to ask.

Finally, if you feel that there are any topics that you really can’t discuss with your rheumatologist, try to raise them with your nurse. They will be able to provide some advice and may be able to help you bring up your problems with your rheumatologist.

Q2. I don't like how my medication makes me feel and so I've stopped taking it. What should I do?

Although stopping your medication may make you feel better in the short-term, if you don’t take your medication as prescribed your RA may get worse.1 There may be alternatives that you can try, so continue taking your medication and make an appointment to see your rheumatologist. Giving them all the relevant information, such as how you have been feeling and when these feelings occur (the TRACK Diary can help you record this) can help them find the right solution for you.

Remember, you are not the only person struggling with treatment; People like me offers you the chance to watch people with similar experiences tell their story.

Q3. I can't take my medication as prescribed but I've found a way that works for me. Will that affect my RA?

For your medication to be effective, it needs to be taken as prescribed1. This is because the amount of the drug in your body needs to be at a certain level to work. If you don’t take your medication as prescribed, the levels may not be appropriate and your RA may get worse.

However, some people find it difficult to cope with the unwanted effects they experience with treatment and are tempted to skip doses. It is important that you continue with your treatment but you should discuss the problems with your rheumatologist.

To help you keep track of how you are feeling, and to aid speaking to your rheumatologist, you can use the downloadable TRACK Diary. This will allow your rheumatologist to see exactly how you have been feeling and when, and to determine whether some of your unwanted feelings may be connected to your treatment plan.

Q4. My RA often leaves me feeling exhausted. What can I do?

Fatigue is a problem that many people with RA suffer with2. Often it is not as simple as getting a good night’s sleep and it can leave people feeling frustrated and irritable.

To address the problem, it is important you and your doctor identify the likely cause of your fatigue. It is possible that it is due to pain from your RA not being sufficiently controlled by your current treatment3, or alternatively, your fatigue could be caused by the medications you are taking. It is very important that you continue taking your medication as prescribed until you are able to discuss your issues with your rheumatologist. They may decide to modify your treatment or alternatively they may prescribe you painkillers that can also help.

Don’t suffer in silence; it is important you are open with your rheumatologist about how you are feeling so that they can help you. Using the TRACK Diary can help you track your fatigue over time and provide your rheumatologist with a clear insight into your RA.

Q5. I often feel nauseous after taking my treatment. What can I do?

Certain RA treatments can make people feel nauseous after taking them3-5. Although usually not serious; it can be very unpleasant and inconvenient. If you frequently feel nauseous you should discuss it with your rheumatologist. They can sometimes offer you additional medications that treat the nausea or they may change your RA treatment to reduce the chances of you feeling sick.

To help your rheumatologist manage your nausea it is a good idea to provide them with as much information as possible. Use the TRACK Diary to record how you are feeling, and bring it to your rheumatologist appointments to discuss how your treatment plan is affecting you.

Q6. I'm worried that my RA treatment will affect my hair.

Some rheumatoid arthritis treatments can cause hair loss3,4. However, it is important to remember that this only happens in a small number of patients (roughly 6-11%)6 and often involves only slight, temporary hair loss. If you are worried about it you should discuss it with your rheumatologist or nurse.

Q7. I am having frequent flare-ups. What can I do?

Unfortunately, flare-ups (pain, increased stiffness in the joints and sometimes flu-like symptoms) will occur on occasions. Mild flare-ups can often be managed with pain-killers (remember to never exceed the maximum dose) and resting when possible. A warm shower or bath can also help relieve stiffness.

If the flare-up is more serious, you should contact your doctor or nurse. Before you speak to them, you should try to have the information they will need available. This includes how long your current flare-up has lasted, where and how severe the pain is, which joints are swollen, what medications you are taking (including painkillers) and whether you have been ill recently. Using the TRACK Diary will mean you have most of this information already and can be shared with your rheumatologist or nurse.

Q8. I am feeling low and often quite depressed. Is this normal?

It can be, the way arthritis affects people is different for every one but there is a difference between feeling depressed and feeling fed up, even though it may be difficult to identify it at the time. If you are feeling depressed don’t wait in the hope that it will just go away on its own because it may not. It wouldn’t hurt to have a chat with your GP if you are feeling persistently low. Or give the professional counsellors at Arthritis Care a ring. It is a confidential one to one support line which can help you cope and feel listened to.

Call 0808 800 4050. Lines are open Monday to Friday, 10am to 4pm.

https://www.arthritiscare.org.uk/help-and-support/helpline

Q9. My family, friends and partner do not seem to be able to understand what I am going through, what can I do?

People with arthritis have to work hard at their relationships, just like everyone else. However, as a person with arthritis, you might have to invest more time and energy into making your relationships work, whether they are of a platonic or intimate nature. Effective communication is an important part of all relationships, including those with your partner, children, parents, friends and work colleagues. So, it is important that you are open and honest about how your arthritis affects you. As well as coping with symptoms such as pain, fatigue and loss of mobility, you might also sometimes feel angry, frustrated and depressed. All of these emotions can affect your relationships with others so it is often helpful to explain this to those close to you. You may find it helpful to give the professional counsellors at Arthritis Care a ring. It is a confidential one to one support line where you can explore these sensitive issues.

Call 0808 800 4050. Lines are open Monday to Friday, 10am to 4pm.

https://www.arthritiscare.org.uk/help-and-support/helpline

References

  1. Fidder HH et al. World J Gastroenterol 2013; 19(27):4344-4350.
  2. Van Hoogmoed D et al. Rheumatology 2010; 49:1294-1302.
  3. Maxtrex 2.5 mg SPC (from the eMC: http://www.medicines.org.uk/emc/medicine/6003/SPC) – last updated November 2013. Last accessed 24th February, 2014.
  4. Arava 10 mg SPC (from the eMC: https://www.medicines.org.uk/emc/medicine/26345/SPC/Arava+10mg+Tablets/) – last updated February 2014. Last accessed 24th February 2014.
  5. Kremer J et al. J Rheumatology 2004; 31(8):1521-1531.
  6. Cohen S et al. Arthritis Rheum 2001; 44(9):1984-1992.

The 'RA Unspoken campaign' is a collaborative project between Arthritis Care, Roche Products Ltd. and Chugai Pharma UK Ltd and is aimed at people with rheumatoid arthritis. The project has been initiated and funded by Roche Products Ltd. and Chugai Pharma UK Ltd.

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RCUKCOMM00179f(2) August 2014