Sue's story: Living with multiple medicines

Sue was a full-time clinical psychologist providing therapy for children, teenagers and their parents. She retired in 2010. Sue lives on her own in the inner-west of Sydney and often has her daughter and grandchildren to visit.

Some medicines are taken regularly; some are taken only as needed.

• Ursofalk (ursodeoxycholic acid): primary biliary cirrhosis
  
• Panafcort (prednisone): pyoderma gangrenosum
  
• Somac (pantoprazole): stomach acidity caused by high doses of prednisone
  
• Ferrograd-C (ferrous sulphate and ascorbic acid): treats anaemia (low iron) caused by chronic inflammation
  
• Folic acid: treats folic acid depletion caused by warm auto-immune haemolytic anaemia
  
• Legalon (milk thistle): healthy liver function
  
• Lipoic acid (a fatty acid and considered an anti-oxidant): general health
  
• Multivitamins and minerals; additional B12, C, D, zinc: to manage various deficiencies and to maintain general health, including bone health, digestion and immune function
  
• Magnesium taurate complex (amino acid-mineral complex): magnesium deficiency
  
• Metagest (a digestive enzyme): aids digestion of nutrients
  
• Fish oil: general health
  
• NAC (N-acetyl-l-cysteine; antioxidant): general health
  
• Troches (method of administering bioidentical hormones): prevents osteoporosis
  
• Citracal (calcium supplement): prevents osteoporosis
  
• Strontium carbonate: prevents osteoporosis
  
• Kenalog cream (triamcinolone acetonide): controls mouth ulcers, a symptom of auto-immune attack.
  

Penicillin, cefazolin, clindamycin.

Ciclosporin, Orabase SM33.

Sue is currently using a large number of both prescription and complementary medicines to manage primary biliary cirrhosis, pyoderma gangrenosum and autoimmune haemolytic anaemia. Her biggest challenges have been with the complexity of her medicine regimen and the constant changes in dosage with each new round of blood tests. Despite her conditions, she still considers herself a fairly healthy person who takes care of herself with a good diet and regular exercise.

More about Sue

In 1999, Sue was diagnosed with primary biliary cirrhosis after she had some abnormal liver function tests. Having always considered herself a very healthy and active person, she struggled to reconceptualise herself as someone living with a chronic illness. While being grateful to the doctor who initially diagnosed her illness at a comparatively early stage, she sought out a GP who would help her manage the illness and who had a holistic approach, as this made the most sense to her.

Apart from the necessary prescription medicines, Sue’s GP also recommended a number of complementary medicines to assist with some of the side effects of her other medications and to improve her overall wellbeing. She is reassured by the fact that her doctor regularly reviews her blood results and adjusts the dosages accordingly. Nevertheless, it has meant that she has had to be very organised and methodical so that she can keep on top of the changes. She has developed several methods of keeping her medicines organised, including a single medicines ‘master’ list, but also uses her diary to keep track of dosage changes. She often wonders whether her way is the best way of doing things, but it works for her.

In 2008, Sue had her first episode of pyoderma gangrenosum, a serious ulcerative skin condition and, at one stage, was in danger of losing her hand. Treatment involved three weeks in hospital, multiple operations to clear the necrotic (dead) tissue and repair surgical wounds, and medication. Had it not been for these treatments, the outcome for Sue could have been so much worse.

Sometimes, Sue has found it difficult to find information and support as her illnesses are relatively uncommon, but she has been proactive in seeking information from the internet. On one occasion, it put her in touch with someone who shared her skin condition and this led to a recommendation for a medication to treat a troubling symptom. Sue was thrilled when this worked and was pleased that there was an avenue available to share experiences and to feel that you are not alone.

In 2012, Sue was hospitalised and diagnosed with auto-immune haemolytic anaemia. With the addition of new medications, her medicine regimen became very complex and challenging to manage. Sue does not, however, like to be dictated to by her medicines and tries to live as normal a life as possible. At times, she has difficulty swallowing them all and will often take them with a mouthful of food rather than water, as they seem to go down more easily.

Sue is now 12 years post diagnosis of her liver condition and credits this largely to her medicines, both prescription and complementary. While the cost of her medicines has required her to prioritise things at times and she has not been able to travel as much as she would like, she accepts that the medicines are just part of who she is now and that, in taking them, she is doing something constructive in fighting against and managing her conditions.

View list of other people taking multiple medicines