Micaela's story: Living with multiple medicines

Find out about Micaela and hear her speak about the value and challenges of taking multiple medicines.

Female
Age at interview: 38
Number of medicines: 21
Cultural background: Anglo-Australian

 

Background

Micaela is a Government Publications Officer from Sydney. To enable her to manage her health, she works part-time and lives with her mother with whom she has a mutually supportive relationship. She often house-sits for friends.

 

Current medicines and conditions

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

  • Imuran (azathioprine): Crohn’s disease
  • Salofalk/Pentasa (mesalazine): Crohn’s disease
  • Effexor (venlafaxine): depression
  • Nexium (esomeprazole): reflux
  • Ditropan (oxybutynin): excessive sweating
  • Magnesium: magnesium supplement (helps with muscle pains and weakness)
  • Multi B forte: vitamin B supplement
  • Vitamin C: vitamin C supplement
  • Calcium: calcium supplement
  • Vitamin D: vitamin D supplement, helps with absorption of calcium
  • Zinc: zinc supplement
  • Fish oil: supplement
  • Antihistamine tablets
  • Advantan (methylprednisolone) cream: dermatitis/eczema
  • Advantan (methylprednisolone) fatty ointment: dermatitis/eczema
  • Chlorella (chlorophyll): heavy metal retention
  • Rhodiola complex: anxiety, energy
  • Canesten (clotrimazole) cream: fungal skin infections
  • Naprogesic (naproxen): period pain
  • Endone (oxycodone): strong pain for costochondritis (inflammation of cartilage)
  • Ativan (lorazepam): severe anxiety.

 

Medical conditions not currently treated with medicines

  • Inflammation of joints and muscle weakness
  • Costochondritis
  • Bursitis
  • Sinusitis
  • Endometriosis.
 

Previous conditions and medicines discussed

  • Crohn’s disease: ongoing, first diagnosed 2002. Tried ciclosporin early on but had an adverse reaction. Previously on olsalazine, which was recently changed to mesalazine.
  • Pain: previously on long-term painkiller (ketoprofen); now only on as-needed painkillers.

 

About Micaela

Micaela currently takes 17 medicines regularly and further medicines only when she needs them. Micaela has had a number of major illnesses, including depression and Crohn’s disease, which she currently has, and inflammatory eye disease, which is in remission.

Micaela has taken some very strong medicines for her eye disease and Crohn’s disease, and is generally prepared to put up with any side effects as she knows her medicines have improved her everyday life. It is sometimes difficult to manage all her medicines but Micaela finds a medicines list helps.

Micaela’s GP oversees all her medicines and is better at discussing things and providing information than her specialists. The internet and social media have been useful for providing information and sharing experiences about her conditions and medicines.


More about Micaela

Micaela has experienced a number of major illnesses, the first being depression in 2001, which has been treated with various antidepressants including venlafaxine which she currently takes.

Late in 2001 Micaela was diagnosed with inflammatory eye disease after experiencing temporary blindness. She was started on daily intravenous infusions of steroids until her vision improved, and then on oral steroids and methotrexate to keep the condition under control. Flare-ups were treated with steroid infusions. In 2011 she was weaned off oral steroids and methotrexate as her disease was mostly in remission. Since then, occasional flare-ups have been treated with topical steroids to her eyes.

Seven months after having her first episode of inflammatory eye disease, Micaela was diagnosed with Crohn’s disease, despite being on oral steroids and methotrexate for her eyes which are also used to control Crohn’s disease. Micaela currently takes Salofalk and Imuran for her Crohn’s disease.

Micaela knows that some of the medicines she has taken over the years are very strong and are also used to treat cancer. She has experienced a number of side effects, especially from the steroids, such as muscle and joint pain, mood changes, lowered immunity, mouth ulcers and weight gain. It can be difficult for Micaela to tell whether some of her symptoms are due to her medicines or one of her medical conditions as it is quite common for people with Crohn’s disease to have joint or hip problems and muscle weakness.

When she first started high-dose steroids for eye disease, despite experiencing side effects such as mood changes, Micaela felt relief as they had an immediate effect, and knew that the dose would decrease. She was concerned when she was told by her doctor that methotrexate might affect her ability to have children, especially as she also has endometriosis. Micaela tries to avoid using Endone unless it is absolutely necessary, as it is a fairly strong painkiller.

Micaela’s GP oversees all her medicines, many of which were started by specialists. Micaela appreciates being given information in advance from her doctors about things to be aware of with both her medical conditions and medicines. While her GP is great at discussing things, some of her specialists aren’t so good at providing information without her asking them specific questions. Some of her specialists tend to just be interested in the condition that they are treating and do not view the patient holistically and how the disease and medicines can affect other parts of the body. Micaela regularly sees two pharmacists and appreciates their advice and information on medicines. She has found the internet useful for researching her conditions and medicines, and online forums and support groups helpful for sharing information and experiences.

Now that her medicine regimen is fairly stable, it is easier for Micaela to manage her medicines. She finds having a medicines list useful, but still occasionally misses doses. Sometimes this is because she forgets, and at times if she is feeling low with her depression, getting out of bed and taking pills seems just too hard, although she generally takes her antidepressant to prevent withdrawal symptoms such as anxiety or restlessness. She has thought of getting her pharmacist to package her medicines into Webster-paks, but feels that at 38 she is too young yet. Her complex medicine regimen means she always has to be very organised about her medicines, which makes it difficult for her to be spontaneous, such as sleeping over at someone’s house at short notice.

The cost of Micaela’s medicines is an issue, especially the supplements and other medicines that are not on the PBS. Sometimes she can’t afford to pay for some of her supplements, which can cost up to $1000 a month.

While sometimes finding having to manage all her medicines a bit depressing and frustrating, Micaela feels her medicines have helped her day-to-day life and overall wellbeing.

 

Listen to Micaela's story

Micaela was on steroids and methotrexate for about ten years, which had several side effects and, because they suppressed the immune system, she picked up illnesses often, including some that were unusual in adults.
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Micaela has only recently discovered that her pharmacists are a readily available resource for medicines information.
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Micaela has found that she has been disadvantaged by recent changes to the PBS.
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Micaela found online forums helpful when she needed to discuss what she was going through, but did not want to join a face-to-face support group.
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Micaela was dissatisfied with the limited information her doctors offered before she commenced a new medicine. She is proactive about finding information, but sometimes does not know where to look and would like more help from her doctors.
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Micaela can feel the negative impact when she stops her complementary medicines, but she sometimes has no choice because of their high cost.
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Micaela sometimes feels that doctors are quick to take risks with her body by trialling medicines without offering the necessary information so that she can make a considered decision.
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Micaela finds that many people have opinions about her conditions and how she should be managing them, which is not always helpful.
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Micaela finds it frustrating when none of the doctors she sees is willing to discuss an issue she is having with her medication.
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Micaela feels that she can’t be spontaneous in the way that other people in their 30s can be, because of her medicines.
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Micaela has unpredictable allergic reactions to things like food because of the effects of the immunosuppressants she is taking for Crohn’s disease.
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Micaela appreciates that her current ophthalmologist has taken a more holistic approach to her healthcare, which is very different from the approach she often encounters with other specialists.
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Micaela believes that people should view their own situation as important and worthy of respect. She encourages people to engage their health professionals in discussions about their medicines.
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Micaela had recently been diagnosed with costochondritis (inflammation of the cartilage in the chest area). She had not received enough information from her doctors, which was something she had experienced before. She went to the internet for information, which she then shared with her specialists and GP.
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Micaela resents having to organise her medicines, which she attributes to her personality.
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Micaela wants to emphasise to health professionals that communication with their patients is paramount.
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Micaela acknowledges that a dose aid would probably be useful, but she is reluctant to start using one as she feels she is too young.
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Micaela found her specialist dismissive and unwilling to engage in discussion with her. She consequently changed to a new specialist.
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Micaela needed to try a number of medicines to treat Crohn’s disease before finding one that she was not allergic to, that worked and did not cause side effects.
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Micaela is mindful that she takes medicines that can have serious side effects and impact on her future. She was initially quite frightened but she felt reassured by the response of a specialist in whom she had a great deal of trust.
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Micaela’s conditions are ongoing, so she has had to drop to part-time hours, which impacts on the affordability of her medicines.
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Micaela’s conditions are ongoing, so she has had to drop to part-time hours, which impacts on the affordability of her medicines.
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The Living with multiple medicines project was developed in collaboration with

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