Treatment of CIDP is usually very effective with about 80% of new cases having a dramatic response to therapy. Although some patients go into a long-term remission after a short course of treatment, many require long term treatment as described earlier.

Neither IVIg nor plasma exchange is contraindicated during pregnancy. However, as plasma exchange requires additional considerations and monitoring, IVIg might be preferred.

If you have difficulty accessing physiotherapy, but feel it would benefit you, or if you find yourself on a lengthy waiting list for community physiotherapy, please contact the office at GAIN.

Personal cleanliness for those who are unable to attend themselves fully can be a problem. You may have reduced use of your hands, maybe temporarily, but sometimes permanently. Some people may struggle to wash themselves, brush their hair, use the toilet independently, brush their teeth, cut their nails etc. It is important for both hygiene and self-esteem that these matters are attended to by a carer.

Through no fault of their own, many people’s teeth are neglected during periods of serious illness. Once you have returned home, arrange an appointment with your dentist as soon as possible. If you have difficulty attending a dental practice, enquire about community dental services. Using an electric toothbrush can be helpful if you have weakness in your hands. More advice can be found on the British Society for Disability and Oral Health website; https://www.bsdh.org/index.php/how-to-find-a-special-care-dentist

Financial concerns may be causing anxiety, especially if you are the main wage-earner and unable to work. If you are employed, stay in regular contact with employers and make sure you understand the absence and returning to work processes. There is more information about returning to work later in the booklet.

GAIN may be able to help with the cost of frequent journeys to visit a family member in hospital. Visit the website or get in touch and ask about our Personal Grants Scheme.

Once you leave hospital, or if you are already receiving treatment as an outpatient, you could be entitled to benefits to help you support yourself and your family. The benefits system is complex and subject to change, but Citizens Advice has up-to-date information on their website, and they can even help you make an application for benefits such as Personal Independence Payment (PIP) or Universal Credit:  https://www.citizensadvice.org.uk/​

Further information on benefits can be found at https://www.gov.uk/browse/benefits

If adaptations to your home are needed, such as installing a ramp or downstairs bathroom for example, it is worth contacting your local council to see if you are entitled to help via a Disabled Facilities Grant:

England and Wales

https://www.gov.uk/apply-disabled-facilities-grant

Scotland

http://www.disabilityscot.org.uk/info-guides/disabled-home-adaptations-1/

Northern Ireland

https://www.nidirect.gov.uk/articles/disabled-facilities-grants-0

Republic of Ireland https://www.citizensinformation.ie/en/housing/housing_grants_and_schemes/housing_adaptation_grant_for_people_with_disability.html

If you are on a low income, or someone in your household is severely and permanently disabled, you may be entitled to a reduction in Council Tax. Further information is available in the Carers UK Council Tax factsheet:  https://www.carersuk.org/images//Factsheets/2020-21_factsheets/Council_Tax_April_2020-21.pdf

During illness, nutritional needs are at their peak, but it is not unusual for patients to lose their appetites or taste for food. Worry and fear often accompany illness and can also contribute to loss of appetite. Good nutrition can be a powerful ally in the process of recovery, so if you need advice, ask to speak to a nutritionist. If taste has been affected, this will usually improve with time. Plastic utensils can be used if bitter or metallic tastes are experienced whilst eating. Sometimes taste changes can be related to medications, but drugs should not be discontinued without first consulting your GP. Try to eat a healthy, balanced diet and keep consumption of sugary and processed foods, and drinks that are high in caffeine or alcohol to a minimum. There is some excellent advice on nutrition on the NHS website; https://www.nhs.uk/live-well/eat-well/

Although caused by your immune system malfunctioning, CIDP does not weaken or damage your immune system, and having CIDP does not mean that your immune system is compromised, unless you are being treated with steroids.

Regular exercise and maintaining a healthy diet and sleep regime will all help during recovery. There is anecdotal evidence, and lots of hype surrounding supplements and alternative remedies, but very few are known to have real benefits. Most people are able to get the vitamins they need from their diet, but if you wish to take dietary supplements, your doctor (rather than Google!) will be able to advise you on anything that may help you during recovery.

Physiotherapy, occupational therapy (OT) and speech and language therapy play a vital role in maximizing functional ability.

Exercise can help to improve your muscle strength and reduce your overall sense of fatigue. It can also aid sleep and support mood through the production of endorphins. Other benefits include helping your heart and lungs remain healthy and making you feel more positive about yourself. However, it may take weeks or even months before you feel some of the benefits, so it is important to pace yourself. You will find lots of exercises online, including seated exercises, or you could ask your GP or physiotherapist about how to start regular exercise and what exercises might be right for you.

Visit the NHS website for advice on exercise:  https://www.nhs.uk/live-well/exercise/

and also for advice on sleep: https://www.nhs.uk/live-well/sleep-and-tiredness/

Being in pain naturally impacts on mood and the ability to cope with everyday situations. If you are experiencing pain, it is important to talk to your family and friends about this, so that they understand what you are going through and why you might be irritable and difficult to live with at times.

Some other sources of support are shown below.