Useful Information for People Living with Sjögren’s

Sjögren's

This 1 hour Youtube lecture by Rheumatologist Dr Elizabeth Price gives an excellent overview of practical self-management of Sjögren’s, with BSSA.

Sjögren’s Research Ireland has a host of resources including webinars, podcast, patient information leaflet, video about eye research

Sjögren’s Ireland is a patient advocacy group aiming to improve awareness, advocate for better services and build a supportive community. Email sjogrensireland@gmail.com or follow their social media channels: Twitter, Facebook & Instagram.

The British Sjögren’s Syndrome Association. Membership includes a magazine, online webinars and access to an Irish support group.

Sjögren Europe is an umbrella group for Sjögren’s organisations around Europe. Their website has further information, articles and videos.

Sjögren’s Foundation is the American association, and their website has excellent resources for patients and medical professionals. The results of Sjögren’s Foundation patient survey 2021 Living with Sjögren’s are very interesting.

Sjögren’s Foundation information on diagnostic tests for Sjögren’s

‘Sjögren’s: The Patients’ Perspective’ article by Kathy Hammitt (Sjögren’s Foundation Vice President) in Clinical & Experimental Rheumatology, 2020.

“The Sjögren’s Book” (5th edition) by Dr Daniel J. Wallace is excellent and will probably answer a lot of your questions. If you ask your local library they should be able to order it in for you.

Sjögren’s Advocate website is run by Dr Sarah Schafer MD, and addresses how to advocate for yourself to Doctors and other healthcare providers.

#BeyondDryness is a website by Rheumatologist Dr Brandon Law describing the systemic manifestations of Sjögren’s

Arthritis

Did you know that 88% of people with Sjögren’s have fatigue, 82% joint pain & 72% muscle pain?

Arthritis Ireland offers a helpline, online support and a range of groups and events around the country, including: a 6 week arthritis self-management course called Living Well with Arthritis and Related Conditions and a 6 week mental health course called Behind The Pain.
For more information email helpline@arthritisireland.ie or free phone their volunteer run helpline on 0818 252 846.

HSE runs a similar self-management 6 week course called The Living Well Programme. Click here for more information & sign up details.

Chronic Pain Ireland is a charity that provides education & support for people living with pain.
They run a half day intensive course on self-management of pain, events & meetings for members. For more information email info@chronicpain.ie or phone their helpline on 01-8047567

HSE Primary Care Teams are now located in every area in Ireland. You can discuss with your GP if you need a referral for your local Physiotherapist, Occupational Therapist, Psychologist, Public Health Nurse, Social Worker, or Speech Therapist.

HSE funded Rheumatology Rehabilitation services are available in Harold’s Cross, Peamount Hospital, and Manorhamilton. Talk to your GP or Rheumatologist about referral options if you think you may benefit.

Occupational Therapists in Tallaght University Hospital produced these helpful videos on coping with arthritis: 1) Lifestyle Management for Inflammatory Arthritis, 2) Living with Arthritis: Protecting & Pacing & 3) Looking after your hands with Osteoarthritis

Medication

Under the Drugs Payment Scheme (DPS) you or your family will not pay more than €80 each calendar month for approved prescribed drugs and medicines. For example, Pilocarpine/ Salagen is a costly Sjögren’s medication available on DPS. You can ask your GP or Consultant to put non-prescription approved medications (eg eye drops) on your prescription to be included in the scheme.

Click here to apply online for the scheme.

Hydroxychloroquine (HCQ), also known as Plaquenil, is frequently used with Sjögren’s as well as other diseases such as Lupus. Dr Donald Thomas has created this comprehensive patient’s guide to using HCQ.

Sjögren’s Foundation has a useful guide to the medications used to treat Sjögren’s.

Talk to your doctor about a review of your medications, and ask if any of them have dry eyes or mouth as a side-effect that may worsen your symptoms? They may be able to offer you an alternative with reduced anticholinergic (drying) effects. Popular drugs with these side-effects include antihistamines, nasal decongestants, ipratroprium inhalers, phenothiazines and tricyclic antidepressants.

Dental

Did you know that people with Sjögren’s have an increased risk of tooth loss & oral infections due to reduced saliva?

Adults (aged sixteen and over) with a medical card have access to a range of dental treatments and clinical procedures under the Dental Treatment Services Scheme. The HSE has prioritised the range of treatments to ensure access to emergency dental care for eligible patients. Additional care is considered in exceptional or high risk cases. Patients with Sjogren’s who fall within the category of exceptional/high-risk cases are eligible for a more extensive range of treatments, where approved as clinically necessary by a Principal Dental Surgeon.

Sjogren’s Foundation brochure on Dry Mouth: Diagnosis and Treatment

Sjögren’s Foundation patient information sheet on Oral Candidiasis (Thrush) in Sjögren’s.

You can watch back on Dr Eleanor O’Sullivan’s video presentation on managing Sjogren’s dental issues at Sjögren’s Research Ireland’s 2022 webinar.

Eyes

Did you know that 95% of people with Sjögren’s have dry eye?

Sjogren’s Foundation brochure on Dry Eye: Diagnosis and Treatment.

You can get a free annual eye test in Ireland, if you have a medical card or enough PRSI contributions.

If you’re taking Hydroxychloroquine/ Plaquenil, talk to your doctor about the risk of retinopathy (damage to the back of the eye), as you may need an annual OCT scan of your eye. You may want to phone around your local opticians and optometrists to find one that offers OCT scan, they usually charge a small fee.

Skin

Did you know that nearly half of all people with Sjögren’s develop issues with their skin?

Irish Skin Foundation dermatology nurses provide free, specialist guidance to people struggling to manage skin conditions such as acne, eczema, psoriasis, hidradenitis suppurativa, rosacea and many other skin problems. Click here for their online form or phone their helpline on 01-4866280.

Sjögren’s Foundation blog has good information on being Sun Smart with Sjögren’s.

Mental Health

Did you know that about half of people with Sjögren’s are also diagnosed with anxiety and/or depression?

If you are worried about your mental health, talk to your GP about services in your area.

Counselling in Primary Care is a free HSE service for medical card holders in Ireland. Click here to learn more.

Aware is a charity providing support for those living with mental health difficulties, including an 8 week Mindfulness Based Stress Reduction course, and a 6 week CBT Life Skills course. Click here for their online form or free phone their helpline on 1800-804848.

Samaritans is a registered charity aimed at providing emotional support to anyone in emotional distress, struggling to cope or at risk of suicide in Ireland. Free phone 116-123 or click here for their online contacts.

Cancer

Did you know that people with Sjögren’s are more likely to develop Lymphoma?

The Irish Cancer Society Support Line is a supportive information service staffed by experienced cancer nurses where anyone concerned about cancer can get trusted information and advice about any type of cancer. Click here for their online form or freephone their helpline on 1800 200 700.

Arthritis Foundation patient information on Cancer Risk with Sjogren’s.

Migraine

Did you know that about 50% of people with Sjögren’s have regular headaches and 30% have migraines?

Migraine Ireland offers a helpline, useful website and a range of groups and events. For more information email info@migraine.ie or phone their helpline on 01-8941280

Specialist migraine clinics are run in St Vincent’s Hospital & Beaumont Hospital. Talk to your GP about a referral if you think you would benefit from a consultation.

Pregnancy

Did you know that Sjögren’s is associated with a higher rate of miscarriage, preterm birth, low birth weight & birth defects?

The National Maternity Hospital offers a specialist clinic for Rheumatology patients who are pregnant.

For more information on managing the risks of rheumatic disease during pregnancy watch this video by Arthritis Ireland with Prof Doug Veale.

Sjögren’s Foundation patient information sheet on Pregnancy in Sjögren’s

Digestive System

Did you know that over half of all people with Sjögren’s have reflux, indigestion, trouble swallowing and/or choking?

Patient information sheets on tips for managing gastrointestinal (GI) symptoms and how to manage reflux by Sjögren’s Foundation.

Dysautonomia

Did you know that about half of all people with Sjögren’s may have some form of autonomic dysfunction?

‘Sjögren’s and the Autonomic Nervous System’ YouTube lecture (45 min) by Dr. Brent Goodman, Director of the Autonomic Lab at Mayo Clinic in Scottsdale, AZ with Dysautonomia International.

Sjogren’s Advocate website by Dr Sarah Shafer MD has information on Dysautonomia in Sjogren’s.