Emma's story: Living with multiple medicines

Emma works full-time as a health professional. She lives on her own in the inner west of Sydney.

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

• Salazopyrin-EN (sulfasalazine): enthesopathy (disorder of ligament and tendon attachment to bone) from hypermobility syndrome
  
• Panadol Osteo (paracetamol): pain management (for pain associated with osteoarthritis, hypermobility syndrome and pelvic nerve entrapment)
  
• Durotram (tramadol): pain management
  
• Codeine phosphate: management of breakthrough pain
  
• Lyrica (pregabalin): nerve pain in pelvis
  
• Epilim EC (sodium valproate): nerve pain in pelvis
  
• Celebrex (celecoxib): anti-inflammatory for pain associated with hypermobility syndrome
  
• Probitor (omeprazole): gastro-oesophageal reflux (GORD), stomach irritation from Celebrex
  
• Gutron (midodrine): postural orthostatic tachycardia syndrome (POTS) and neurocardiogenic syncope
  
• Florinef (fludrocortisone): postural hypotension (due to POTS)
  
• Coralan (ivabradine): slows fast heart rate (due to POTS)
  
• OsmoLax (macrogol) powder: constipation
  
• Normacol (sterculia) granules: constipation
  
• OsteVit D (vitamin D supplement): osteopenia (lowered bone mineral density)
  
• Amcal One-A-Day Multi Vitamins: multivitamin supplement
  
• Pyroxin (pyridoxine): vitamin B6 supplement (for breast pain)
  
• Imigran (sumatriptan) nasal spray: migraine
  
• Motilium (domperidone): nausea
  
• Botox (botulinum toxin) injections: pudendal neuralgia (pelvic nerve entrapment); injections every six to eight months
  

Food intolerance: managed by diet and vitamin supplements (as recommended by allergy clinic).

Emma currently takes 16 medicines regularly, mostly for managing the various symptoms of her hypermobility syndrome (HMS), including joint and pelvic pain, and low blood pressure, especially when she stands up from lying or sitting. She has tried stopping some of her medicines, but her symptoms flare up, so she realises that she really needs to takes them all.

Emma has multiple food intolerances so she has had to be careful with her medicines as some of them have contained substances to which she reacts.

Emma is grateful that her medicines have improved her quality of life, especially her cardiac medicines that have helped to normalise her blood pressure, which has helped her feel like a normal person again.

More about Emma

Emma currently takes 16 medicines regularly and further medicines only when she needs them. Most of her medicines are for managing the various symptoms of her hypermobility syndrome (HMS). Throughout her early years she had a lot of muscle and joint sprains, and after her condition deteriorated in her early 20s she was found to have HMS, a connective tissue disorder which not only weakens her tissues and joints, but also means she has had problems with low blood pressure and pelvic pain.

After her diagnosis, Emma’s rheumatologist started her on Salazopyrin to help with her enthesopathy (a disorder of ligament and tendon attachment to bones) associated with HMS, and the anti-inflammatory Celebrex to help with her symptoms as she was finding it hard to continue working full-time. She still takes Celebrex, and also Probitor to help with stomach irritation caused by Celebrex. Around this time she was also found to have weaker bones than normal so started vitamin D supplements to help strengthen her bones.

When she was in her 30s, Emma developed problems with low blood pressure, especially when standing up from lying or sitting, and a very rapid pulse, which was diagnosed as postural orthostatic tachycardia syndrome or POTS, which is often associated with HMS. Her POTS is worse in the morning, but is better controlled since she started a number of cardiac medicines over the past two to three years. One of these medicines, Gutron (midodrine) is not registered for use in Australia, but Emma has special approval from the Therapeutics Goods Administration (TGA) to use it. Emma gets it through her local hospital pharmacy, which has to order it especially for her. It is very expensive – currently around $160 every four to six weeks. She also takes Coralan which has helped slow her heart rate, and has really helped improve her life as she can think much more clearly now that her heart isn’t racing. Over summer, her blood pressure became very low at times, so she recently started on Florinef, which has made her feel better and less likely to pass out, especially in the mornings, which has really helped as Emma works full-time.

Emma had quite severe pelvic pain due to nerve entrapment linked to her HMS. Surgery wasn’t very successful but her pain is now fairly well managed with regular Lyrica and Epilim (for nerve pain) and Tramadol (an opioid) plus injections of Botox every six to eight months to block the nerves.

As Emma takes most of her medicines twice a day, she hasn’t found remembering to take them too difficult as long as she leaves them out where she can see them. The only problems she has are with the Florinef, which has to be kept cool, so she has to remember to take it out of the fridge, and the midodrine, which she has to take half an hour before she gets up to help raise her blood pressure before she gets out of bed each morning.

Emma used to hide all her medicines when friends came over as she was a bit embarrassed at having to take so many, but now she just leaves them out as all her close friends know about her medicines. At times she has tried stopping some of her medicines, but her symptoms flare up, so she realises that she really needs to take them all.

Emma has multiple food intolerances, including to salicylates and many preservatives, which has meant she has had to be careful with her medicines as some of them have contained substances to which she reacts. She has had reactions to some generic brands of medicines but not to the original brand name product.

Emma has found the worst aspect of taking medicines is severe constipation from her opioid painkillers, which despite a high-fibre diet, means she has to take laxatives regularly. Despite this, she is grateful that her medicines have improved her quality of life, especially her cardiac medicines that have helped to normalise her blood pressure, meaning that she feels like a normal person again.

Emma has found it challenging to take her medicines when she is about to have surgery. She has since discussed this with an anaesthetist and now knows what to do with her current medicines.

So I guess when you're like fasting for surgery or having, especially orthopaedic surgery, I might have to stop particular things for a couple of weeks before. So that's mainly anti-inflammatories if you're having joint surgery. I find the hardest thing is when they make you fast before surgery. So I wasn’t actually taking any drugs. Because I've got so many medicines and they like you to have an empty stomach, I wasn’t taking anything before my surgery. So it was actually a problem like when I woke up from the anaesthetic.

So the anaesthetist has told me which ones that I should be taking before my surgery and which ones I can take after. So it took probably maybe until my fourth anaesthetic before I got the guts to ask because I was generally feeling quite lousy after it. Yes, they've sort of sorted it out now. You take this, like the particular ones and which ones aren’t so important. They always make sure you take your painkillers just because you're going to wake up in pain anyway. They do actually make sure that you take reflux medications just in case of nausea.

Emma finds pharmacy opening hours are not always convenient, particularly with her limited mobility and full-time work hours, and they do not always have what she needs in stock.

Emma:

Sometimes the pharmacy hasn’t had some things I've taken but they've always gone and run to one of the other pharmacies in my suburb to go and find them. So sometimes they don’t just seem to have the stock. Generally I've been okay and have managed to get them. I may have had to drive to another suburb once to kind of get something just because it was late in the day, you know. I've left it a bit too late and gone, oh dear. So, yes, generally it's been fine … I've been lucky. I guess I chose a pharmacy that opened til nine o'clock at night. So it did take me a little while when I first moved to my suburb to find one that I felt comfortable with because I generally leave all my prescriptions with the pharmacist so that they're there. So every time I can go into the chemist, that he's got them in a file.

There has been one time when they lost the prescription. That was a little bit awkward. So, and I think it was for maybe my Lyrica but because it was a private script they were okay. So they actually could supply it to me and just get the script later. I guess with the PBS ones they have to get them within so many days. They did eventually find it so I was very lucky. No, they've been ... I think that's very important that pharmacists can hold onto scripts.

Jacqueline:

What difference does that make?

Emma:

I guess, for me, if I come home from work and I don’t want to particularly go back home first and just want to get things when I'm out, I can just go straight to the pharmacy. If I've run out of a script at the pharmacist and I've left the new one at home and I go in there and I don’t have it, I generally have to take it back later which, you know, with arthritis, having to walk up the street, it's quite annoying, like, to have to do that again when you've just been out. I guess I could have gone back within a week and taken it but I like to get things done straight away. So I think that's important just because they're all kept together. I am organised so I probably would manage doing it at home but it's just the convenience of having them all in the one spot.

Emma finds it difficult to take her medicines when she has a gastric illness. She finds it really hard to stop taking them for the time she is sick because of the high number of medicines she takes.

It is really hard. I would probably not take all of my medicines. Like I would probably take, say, the Epilim and the Lyrica and the Durotram because I know that I can't stop them. I may leave out some of the others just because I know that Celebrex and Salazopyrin might upset my stomach being empty but you definitely need to take them slowly. You can't just take them all at once like I normally do, just take the lot and swallow them three or four at a time. Yes, you need to take them over a probably half an hour period just to make sure. Yes, getting sick is not a good thing.

Emma tried generic medicines, but she had reactions to one of them and had difficulty opening the package and swallowing the tablet of another one.

I think the only time I've had a problem with taking medicine, I had an Epilim brand. It was a generic. The packaging was really hard to get the tablets out of, like very hard. I actually had to cut the tablet out because I couldn’t push it out with my thumbs. I just said to the chemist, don’t give me that brand again because I just can't. It's like I don’t have the strength of my thumbs to do it … The tablet seemed to be slightly bigger than the Epilim brand. So that was a bit of a problem. Like, I'm okay like because I tend to swallow a few things at a time. But if they are just that bigger, it's quite, you know, annoying to the throat … I used to take Losec but the colouring in the tablet, for some reason, didn’t agree, was actually giving me reflux just because of my food intolerance. So the doctor has actually suggested breaking open the capsule and throwing the capsule away and swallowing the granules. I just ended up just swallowing the capsule anyway. It's been fine. It was quite funny taking things for reflux that actually give you reflux. So every time they've tried to swap to another brand of omeprazole, I'm just like, no. So, yes, just stick with one that [you know] … it makes you feel okay.

Emma found managing medicines easier when she was living at home. Now she lives on her own and goes out at night, she occasionally forgets her medicines.

I pretty much was probably only on one or two at that stage. So I probably remembered to take them because they were specifically with my meals. I guess Mum was there to remind me. Now that I'm on my own it's kind of like, you must remember. I do sometimes forget. If I do go out with my friends in the evening for dinner and I get home late at night, 11 o'clock, I may forget. I may not take all of them because it's so late in the evening. I guess that's the hardest thing. I get tired.

Emma only takes the complementary medicines her doctors suggest, because many of them trigger her food intolerances.

The only things I would take would be Amcal one a day. It’s a multivitamin. That’s because I've got food intolerance. So a lot of … I can't eat a lot of foods that have got vitamins. The Allergy Clinic has recommended that one just replace things. So probably vitamin B6 as well. They’ve all been recommended by doctors. So I haven't chosen to take anything. A lot of the things I may have tried in my younger days, like alternative kind of things. I can't take, I just found out they're not good for my intolerance. So I stopped all those kind of things and just stuck to what I've been told to take. 

Emma does not mind close friends knowing about her medicines as much as she used to, but she prefers to keep her medicines away from people she doesn’t know well.

I guess originally I probably hid the medications if my friends were coming over. I didn’t really want people to see because I'm actually on a large amount of medication, probably over 10. So it doesn't really look good all piled up. Like I've got a small freezer at home so they're all sitting there. I guess with my really good friends, they know I'm on all these things now. So I just leave them there and I don’t bother. So I guess that probably doesn’t worry me now, having them out on show. I guess if someone I didn’t know so well was coming then I might hide them just to keep them away. You don’t really want people to know that you're on so many things, I guess.

So probably before I started taking so many things I would have got up out of bed and had a shower first before I started doing anything. But since I know that I do have low blood pressure, it will really affect me if I take a shower within one or two hours of getting up. So I need to get up and eat first, not because I'm hungry. It’s because of my medicines that I need to take so that, by the time I hit that heat and humidity in the shower, I feel well enough, especially because I'm living on my own. If something was to happen, if I was to pass out, then I could be in a little bit of difficulty. As far as like getting the washing done or something, that doesn’t make much difference to the rest of my routine. It’s mainly when I'm eating, showering and dressing.

Emma stopped taking one of her medicines after her father made repeated comments about the number of medicines she took. The outcome was quite good for that medicine, but it is not something she would be willing to do with other medicines.

It's mainly my family. My friends ... they're all pretty understanding. So my mum, she's good. But my dad is just like, oh my goodness, you're like a grandmother. You take so many tablets and then, yes, sometimes like, you know, maybe you'd be okay if you stopped taking some of them. I actually have stopped taking one of my drugs just to see how I'd go. I used to be on 600 mg of Epilim and I've cut down by 100 only because of things ... you know, people who say things like that. I thought, okay, I'll give it a go, even though I know you shouldn’t do that kind of thing. Actually, I've been okay on the 500 so that's pretty good ... He'll just have a go at me occasionally. He'll just look at them when I go and see him and see them all sitting there. Yes, I think actually I probably have told him I had stopped one but I just wouldn’t stop any of the others because just I know myself that it's not sensible.

Emma stopped taking one of her medicines after her father made repeated comments about the number of medicines she took. The outcome was quite good for that medicine, but it is not something she would be willing to do with other medicines.

It's mainly my family. My friends ... they're all pretty understanding. So my mum, she's good. But my dad is just like, oh my goodness, you're like a grandmother. You take so many tablets and then, yes, sometimes like, you know, maybe you'd be okay if you stopped taking some of them. I actually have stopped taking one of my drugs just to see how I'd go. I used to be on 600 mg of Epilim and I've cut down by 100 only because of things ... you know, people who say things like that. I thought, okay, I'll give it a go, even though I know you shouldn’t do that kind of thing. Actually, I've been okay on the 500 so that's pretty good ... He'll just have a go at me occasionally. He'll just look at them when I go and see him and see them all sitting there. Yes, I think actually I probably have told him I had stopped one but I just wouldn’t stop any of the others because just I know myself that it's not sensible.

Emma has been able to take a flexible approach to her work days and hours, which has been a big help.

Obviously I'm on a lot of medications to cope with this condition. With working full-time, my employer's very understanding. I do get quite tired. So I do split up my days. I work six hours a day in the office and two hours at home, which is very helpful for me. Then I do work at home one day a week which, by Thursday I'm pretty exhausted. So I quite need that.

Emma tends not to forget her medicines that can be stored where she can see them. She finds it more difficult to remember the medicines that need to be stored in particular ways.

So there is also my new drug that I only started three weeks ago that I do take with my breakfast as well. Because it's refrigerated, I have forgotten that once since I started it. It’s not something you should really skip because it's a steroid. I’m trying to find ways around trying to remember, maybe put it near my milk, near my cereal so I can pull it out at the same time. So just, yes, started trying to remember to do that, to put it back in the fridge in the same spot because I guess I felt quite strange when I didn’t take it that day. I think, because I've got … when I'm at home I have most of my medications sitting on my fridge next to where I eat breakfast so they're actually visually there. So I can remember.

In the evening when I sit at my table it's the same thing. So it's just the ones like that are hidden that I forget to take. So I guess my blood pressure medication is sitting in my bed when I leave for work in the morning because I do take that half an hour before I get out of bed. Then when I'm at work I'll take one. I usually feel a bit sort of down by lunchtime, like my blood pressure feels like it's dropping a bit. So I do remember that one. That’s usually in my work drawer. Yes, because I've left the other one sitting in my bed, when I get home I don’t usually see that because I'm not in the bedroom. So, yes.

Emma has to be especially organised with her medicine that requires authority, so that she does not run out.

I have had some difficulties with getting the midodrine because it's a drug approved by the TGA. I have to go to a hospital to get them. So I do have to drive from my home to a big hospital to go and get them. I can't just go to the local pharmacy to get them. So I do have to order and make sure that I realise I don’t have enough with about a week's notice so they can get them from the manufacturer because it's not something they keep all the time just because of the cost. I guess not too many people take them. But leaving it to the last minute, I actually have been close, like maybe having just one tablet left. I have been lucky. So I haven't actually missed any.

Emma and her doctors hoped that midodrine, a medicine for low blood pressure, would also slow her heart rate. When that did not work, she was prescribed an additional medicine that came with a number of risks.

The midodrine, which I'm still currently taking. So that one is for ... actually it's for orthostatic hypotension, so low blood pressure. We thought that may be bringing up the blood pressure, might slow down the heart rate. But it wasn’t doing everything we wanted it to do. So it probably dropped a little bit but not significantly enough to make me feel normal. So I guess that was why we started the Coralan, I think. We didn’t go near ... you've got to be careful with beta blockers and things like that because that actually can speed up the heart rate, drop blood pressure. So the cardiologist ... she had to think. There were a lot of ... these are quite new drugs. So she thought it was worth taking the risk just to see.

Emma associates taking her medicines with her everyday routines of getting up in the morning, having breakfast and going to bed.

I would take my midodrine which is for my blood pressure. So every night before I go to bed I need to remember to take a glass of water into my bedroom and sit it next to my bed so that when I set my alarm to wake up that I see that and I remember to take that particular drug. So then I need to lie in bed half an hour until my blood pressure's gone up enough before I actually stand up and get out. Then I guess I would immediately go and have breakfast because getting in a hot shower's not ideal yet. My blood pressure's probably not high enough.

So I guess when I go to have my cereal I see the medicine in the fridge. So that would be my Florinef that I would take with my breakfast. So I would take that out before I actually eat because I can see that it's sitting there because I have taken it out, like put the milk back in the fridge and forgotten it on one occasion. So I now take it out and I leave it sitting there until I've actually eaten my food, not the whole jar, just the half a tablet, so just remember that I need to refrigerate it. Then I know it's sitting there to take with the rest of my tablets. That also reminds me to take the others with it anyway, even though they're sitting next to me just in that little path, a tablet there.

Emma has a complex medicines regimen and can become very ill if this is not adhered to. Going to hospital is one of the main reasons why she carries a medicines list.

I always keep a list in my purse of my medical history and the medicines I'm taking just in case something was to happen because I'm on my own. If I was taken to a hospital I wouldn’t want to have the doctors just guessing what I'm taking if I was unconscious or a little bit confused or something because I don’t want to stop those things suddenly because that would make me more sick. So I think it's important to carry a list with you everywhere you go. 

Emma chooses to keep her medicines in the original packaging to prevent accidentally taking too many of a medicine. She uses a medication organiser when she travels.

I definitely store them in boxes. With my … if I do go on holidays, I don’t like to take the boxes. I will pack them in like a seven-day pack, so will cut them up, still leave them in the blister but just cut around the particular tablet and put them like morning and evening in a seven-day sort of dosette box.

It’s not error-free. I have stuffed up before and actually put one painkiller too many in one box instead of putting it, or maybe putting it in the morning instead of the evening or something. I have actually before taken it … because I will particularly look at what I'm taking. I’ve sort of thought ‘oh, better not take that’ because I know if I take two of those in a day it's going to make me quite ill. So I think it's generally safer to leave things in their box.

But when you're taking a large amount of medicines like me for travelling just for a weekend or something, it is a lot of weight for me to carry. It’s probably half a … it's definitely backpack bullseyes; it is a lot of extra things rather than just a small container. Occasionally we'll use little photographic containers, the little film boxes, just to put things in if I'm going away overnight because that's just a small kind of thing to take. Yes, you can't put your refrigerated items in that. So you do have to be careful and just make sure you take an ice pack with you and put it in a thermal kind of bag like a fridge bag.  

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