Drug Induced Photosensitivity
What is drug-induced photosensitivity?
Photosensitivity is the abnormal or heightened reaction of the skin when exposed to ultraviolet (UV) radiation from the sun. This leads to skin that has been exposed to the sun without protection becoming burnt, and in turn, this can increase the risk of developing skin cancer.
There are several medical conditions like lupus, psoriasis and rosacea that can increase a person's sensitivity to ultraviolet light. A more comprehensive list of known conditions can be found here.
Drug-induced photosensitivity is the most common type of skin-related adverse drug reaction and can occur as a result of topical and oral medications. Reactions happen when a component of the medication combines with UV radiation during sun exposure, causing a phototoxic reaction that appears as severe sunburn, identified by swelling, itchiness, profuse redness and in the worst cases, blistering and oozing.
Patients taking antifungal medications, in particular, Voriconazole and Itraconazole (the former being more widely known for causing reactions), are often aware of the increased risks of photosensitivity; however, these are not the only drugs that can induce an abnormal response to UV exposure. Other drugs that have been reported to cause photosensitivity are:
- NSAIDs (Ibuprofen (oral and topical), naproxen, aspirin)
- Cardiovascular medication (furosemide, ramipril, amlodipine, nifedipine, amiodarone, clopidogrel – just a few)
- Statins (simvastatin)
- Psychotropic drugs (olanzapine, clozapine, fluoxetine, citalopram, sertraline – just a few)
- Antibacterial medications (ciprofloxacin, tetracycline, doxycycline)
It is essential to note that the above list is not exhaustive, and reported reactions range from rare to frequent. If you think a medication other than your antifungal is causing a reaction to the sun, speak to your pharmacist or GP.
How to protect yourself
In most cases, patients can't stop taking the medication that can predispose them to photosensitivity. Staying out of the sun isn't always possible either - quality of life is always an important consideration; therefore, extra care should be taken to protect their skin while outside.
There are two types of protection:
- Chemical
- Physical
Chemical protection is in the form of sunscreen and sunblock. However, it is important to remember that sunscreen and sunblock are not the same. Sunscreen is the most common type of sun protection, and it works by filtering the sun's UV rays, but some still get through. Sunblock reflects the rays away from the skin and prevents them from penetrating it. When buying sunscreen, look for a sun protection factor (SPF) of 30 or above to protect against UVB and at least a UVA protection rating of 4 stars.
Physical protection
- NHS guidance advises staying in the shade when the sun is strongest, which in the UK is between 11am and 3pm from March to October
- Use a sunshade or umbrella
- A wide-brimmed hat that shades the face, neck and ears
- Long-sleeved tops, trousers and skirts made of close-weave fabrics that stop sunlight from penetrating
- Sunglasses with wraparound lenses and wide arms that conform to the British Standard
- UV protective clothing
Links to further information
Medical Alert Paraphernalia
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content" custom_padding="2px||2px||true|false"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]Medical identification items such as bracelets are designed to inform healthcare professionals of conditions that may impact treatment in an emergency where you cannot speak for yourself.
If you have a chronic condition, food or drug allergies, or take medications such as long-term steroids or anticoagulants, they may alter the treatment you might receive, and it is imperative that healthcare professionals know and can act accordingly. In a situation where you may be unconscious or unable to speak, a medical alert can provide vital information regarding conditions, medications and next-of-kin.
What medical alert items are available?
Many different medical alert items are available, the most common being a bracelet that is worn and easily identified in an emergency.
There are a number of reputable online companies where you can purchase a medical alert bracelet, a couple of which are listed below. Please ensure when purchasing online that the company is legitimate and that their jewellery will be recognised by the healthcare professionals.
https://www.medicalert.org.uk/collections/
https://www.amazon.co.uk/Medic-Alert-Bracelets/s?k=Medic+Alert+Bracelets
Lions Club Message in a Bottle
Lions Clubs Message in a Bottle is a simple but effective way for people to keep their basic personal and medical details where they can be found in an emergency on a standard form and in a common location – the fridge.
Message in a Bottle (known within Lions as MIAB) helps emergency services personnel to save valuable time in identifying an individual very quickly and knowing if they have any allergies or take special medication.
Paramedics, police, firefighters and social services support this Lions life-saving initiative and know to look in the fridge when they see the Message in Bottle stickers supplied. The initiative provides peace of mind that prompt and appropriate medical assistance can be provided, and next of kin/emergency contacts can be notified.
How to obtain a Message in a Bottle
Members of the public and other organisations can obtain a Message in a Bottle kit by contacting their local Lions club; more details are available here.[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Aspergillosis and the benefits of gentle exercise – a patient’s perspective
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Cecilia Williams suffers from aspergillosis in the form of an aspergilloma and Chronic Pulmonary Aspergillosis (CPA). In this post, Cecilia talks about how a light but regular exercise regime has helped improve her health and wellbeing.
I downloaded the exercise guide (available here) in September this year. My oxygen levels had been dreadful, and I wanted to do some form of at-home pulmonary rehabilitation. I was surprised that the exercises in the programme were to be undertaken daily, as previous pulmonary programmes at the hospital were only three times a week. However, this programme was a lot simpler.
I do a stretching routine for a few minutes before the exercises, and I have now introduced 2.5kg weights, but I would do them without weights when I first started. I started at the lowest number of reps for the seated and standing exercises and have gradually increased to the recommended sets. I take my time to do the exercises as I can get breathless, and the time it takes depends on the kind of day I’m having. I break the 30-minute step into two; one first thing in the morning and one after lunch. If I go for a walk outside, I just do the other exercises and no step routine. I make a conscious effort to concentrate on my breathing as indicated on the chart. I use the breathing techniques recommended by Phil (National Aspergillosis Centre Specialist Physiotherapist, video available here), which has been my go-to for getting my breathing back to normal.
When I started this programme, my oxygen saturation levels were poor. I was breathless for long periods, and I would suffer all day with terrible nasal congestion and postnasal drip - I was forever steaming with menthol crystals. Incorporating the exercises and breathing techniques into my daily routine (first thing in the morning in my bedroom with the windows open) has had a profound effect. My congestion clears easier without steaming. I can take deeper breaths and hold my breath for longer. I have noticed the time it takes for me to recover from episodes of low oxygen levels and breathlessness has also improved. I do all the exercises on the table; the balance ones are essential, and with time and practice, I am improving - though I haven’t started doing them with my eyes closed – I am not there yet! I hope that writing my account of the benefits even the lightest of exercise programmes has gives others confidence and encouragement to undertake an at-home exercise programme.
If you want to know more about exercising with aspergillosis, our Specialist Physiotherapist Phil Langdon has a talk available via our YouTube channel here.
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Walk and paint yourself back to health & wellbeing
One of the subjects discussed at our online weekly patient & carer support meeting for the National Aspergillosis Centre in Manchester, UK this week was the importance of maintaining our health & wellness so that we may maintain our best possible quality of life regardless of having a chronic infection.
Exercise is difficult when you have little energy, and one or two participants compared this to being given just a few teaspoons of energy that have to be eeked out carefully over the course of the day to ensure that everything that needed to be done was done. One person commented that some days they only wake up with one teaspoon of energy!
A little gentle exercise every day could play a major role in maintaining your health & wellness and can help with energy too if you keep it up. Over time it will help you breathe and prevent muscle loss.
We can all get great advice from our GP's or Physiotherapists on specific exercises we can do in the home, but one patient mentioned that she had successfully worked their way back to fitness and enjoyment using the walking groups provided by the UK charity 'Walking for Health' who have a network of walking groups led by responsible trainers throughout the UK, specifically for people with asthma.
Well worth a try!
Another aspect of health & wellbeing is emotional health. It can be easy to become isolated and there is only so much entertainment to be found on TV. Another member of the support meeting suggested one of the many Zoom groups that have been set up to teach art!
There are many options online and many different media you can work with.
For example:
https://adult.art-k.co.uk/adult-zoom-classes/
https://www.artcoursework.com/class-courses/free-beginners-learn-to-draw-and-paint-course/
https://www.eventbrite.co.uk/d/online/free--arts--classes/?page=1
Good luck! Doing something is always better than doing nothing.
Aspergillosis and Depression: A Personal Reflection
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Alison Heckler is from New Zealand, and she has Allergic Bronchopulmonary Aspergillosis (ABPA). Below is Alison's personal account of her recent experiences with aspergillosis and the impact it has had on her mental health.
Physical and mental health go hand in hand. Opening up about the impact chronic conditions can have on mental health is important to remove the stigma and feelings of isolation. Here at the National Aspergillosis Centre, we provide a warm, no pressure virtual support group where you can chat with others, ask questions or just sit and listen. Details about our weekly meetings can be found here. If you cannot join our support group, we have also have a friendly Facebook group where you can ask questions, get advice and find signposts to helpful material.
Aspergillosis and Depression: A Personal Reflection
Now that I am not feeling quite so down, I thought it a good time to write about dealing with bouts of “the blues” that verge on depression.
I have really been struggling on and off for a week or two. The pleural pain from ABPA has become quite debilitating; the fatigue and exhaustion are frustrating. In addition, I suffer from waves of feeling hot, especially at night. At times, I become aware that my breathing has become shallow and rapid in an effort to bypass the discomfort of breathing (time to kick in good breathing techniques).
I have been back on Itraconazole for over 8 weeks, and I think I was hopeful that it would bring about improvements, but not as yet. I also only have one kidney and a ‘contorted urethra’ that causes urinary reflux, so pain /discomfort and issues in the plumbing department. I have osteoporosis from extended prednisone treatment and neuro pain in my feet and legs. I ache all over. I feel like I’m living on paracetamol, inhalers etc. None of which seem to make any difference. Doctors confirm that I have no wheeze.
First thing in the morning, my mouth is encased in dry foulness that then reconstitutes as a yellow-brown foam until the sinuses and upper bronchial tract have been cleared; then, it settles to a white or pale green foamy mucus. Getting the pain and the breathing back under control each morning seems like a huge mission that takes at least two hours for meds and gravity to kick (and maybe also a little coffee ritual) in.
Another patient recently reminded us about daily energy levels being visualised as 12 spoons for a day, and every little thing we do uses up a spoon of energy. Unfortunately, of late, my spoons have only been small teaspoon size!
None of the symptoms from all the above things listed, on their own, could be classified as major or significant; but they combine to make it feel like I have just got over a severe acute bout of pneumonia (but I haven’t actually been that sick). Past experience leads me to think that all can be well again with time, rest, and rebuilding fitness.
However, the reality is: What is caused by what condition and what is a side effect of medications is almost impossible to identify. So the whole mess is a complex balancing act for the medical team between the various conditions and possible side effects to get a reasonable quality of life.
I was pushing on, learning to accept that I have to physically rest more often but had a little sitting project I could do. “I can handle this,” I thought. Then a couple more things went wrong; I ripped another layer of skin off my “prednisone tissue paper arms” that required medical dressings, then NZ was plunged into a Level 4 Lockdown because of COVID Delta variant breaking out in the community. So a planned camping trip to celebrate my friend's 50th Wedding Anniversary and return to my beach home to work on projects and collect belongings I hadn’t yet moved to the unit all got cancelled, and I was confined to quarters. Suddenly I was overwhelmed with despondency.
I dealt with Depression many years ago, and also, as a Grief Recovery Facilitator, I have the knowledge and the tools to help myself through this. But it came in waves, and the energy to fight was not available. So it can be a very scary place to find oneself.
Depression is not rational (I have a great deal to be thankful for and conditions in New Zealand are far from difficult). As I was thinking through why I was struggling to throw off the despondency, I realised that to a degree; I had not yet fully grasped the extent of how aspergillosis affects my life. I had had some periods of feeling pretty good compared to how sick I had been when first diagnosed, and flares had been relatively short since then. This time not so much. A bit like when first working through a bereavement loss, you think you have grieved and come to terms with the loss. A bit of denial of the impact, maybe. Then suddenly, it hits... Aspergillosis is Chronic. It will not be recovered from. There will continue to be readjustments in lifestyle needed.
These realities do not need to send me into depression. Recognising and acknowledging the realities can then empower me to see the bigger picture. It can be managed (to a degree). Others have overcome greater issues than mine. There are things that I can work on that will help. My struggle can be an encouragement to someone else. Talking with others and writing all help.
More importantly, for me, as a follower of Jesus Christ, I firmly believe in the sovereignty of God and in the midst of any trial or difficulties I may be having in this world, He has a greater plan for my good, to draw me into a closer relationship with the Trinity of God the Father, Son & Holy Spirit, preparing me for eternity with Him. The trials that I face are instrumental in that process. I am currently rereading a very good book, “The Pressures Off” by Larry Crabb, which is helping with my thinking on this.
If you want to read more about how you can support your mental wellbeing, Every Mind Matters has some top tips available here.
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Palliative Care - Not What You Might Think
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Chronically ill people are occasionally asked to consider entering a period of receiving palliative care. Traditionally palliative care was equated with end of life care, so if you are offered palliative care it can be a daunting prospect and it is entirely natural to think that your healthcare workers are preparing you for the final stages of your illness. That is not the case.
End-of-life care usually revolves around making what time you have left as comfortable at possible. Increasingly palliative care does much more than that - the NHS information page on End-of-life care includes the following exerpt:
End of life care includes palliative care. If you have an illness that cannot be cured, palliative care makes you as comfortable as possible, by managing your pain and other distressing symptoms. It also involves psychological, social and spiritual support for you and your family or carers. This is called a holistic approach, because it deals with you as a "whole" person, not just your illness or symptoms.
Palliative care is not just for the end of life – you may receive palliative care earlier in your illness, while you are still receiving other therapies to treat your condition.
When we have spoken about palliative care to our patient groups here are some of the comments:
Palliative care can be very helpful. One individual I have worked with was very weak when we first met a few years ago after a very active life. He could barely speak. He was referred to a local palliative care team at a hospice where they were able to offer a variety of activities, holistic treatments and socialisation. He is now much better and a very chatty man, moving with a much better quality of life.
they introduce calm and certainty into a situation where neither are usually present.
I can’t recommend being referred to palliative care enough. Please don’t assume palliative care and end of life care is the same.
Palliative care is delivered by a range of medical professionals so you can make enquiries via your GP or hospital specialist. It can be delivered in a number of settings - in a couple of examples we heard about recently a local hospice provided support to achieve personal goals to live well - for the patient and their carer and family. It made a huge difference to the lives of the people concerned.
Hospice UK
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Sunflowers, self-advocacy and the cancer diagnosis that wasn't: Marie's aspergillosis story
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In this podcast by My Rare Disease, Katy, the series founder, talks to Marie about her aspergillosis journey.
- Elusive
- Dramatic
- Permanent
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How to exercise with aspergillosis
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Recording from 29 April 2021, when our specialist physiotherapist Phil Langridge gave a talk to our aspergillosis patient and carers support group on exercise.
-----Contents of video----
-----Contents of video----
- 00:00 Intro
- 04:38 Exercise, physical activity and fitness
- 06:59 Why should we exercise
- 09:51 Why don't we exercise
- 18:14 Goals
- 29:37 Success measures
- 32:09 Where to access help
- 37:03 Progressing exercise
- 44:21 Pain and exercise
- 47:33 Resources
- 48:16 Q&A
Further resources:
- https://www.blf.org.uk/support-for-you - a plethora of useful information
- https://www.asthmaandlung.org.uk/living-with/keeping-active/pulmonary-rehabilitation – great information about pulmonary rehabilitation
- see https://www.bhf.org.uk/informationsupport/support/practical-support/cardiac-rehabilitation for cardiac rehabilitation
- https://weareundefeatable.co.uk/our-stories/ian - one patient with COPD shares his story regarding exercise
- https://weareundefeatable.co.uk/our-stories/krisina - a patient with asthma shares her story
- https://www.nhs.uk/live-well/exercise/ - some more background on exercise benefits and some ideas for options
- https://www.uhb.nhs.uk/Downloads/pdf/PiOtagoStrengthBalance.pdf - an evidence-based exercise programme shown to reduce the risk of falls.
- https://www.nhs.uk/live-well/exercise/gym-free-workouts/ - some examples of exercises
- https://www.blf.org.uk/support-for-you/keep-active/exercise-video – more examples of exercises
- https://blogs.bmj.com/bjsm/2020/12/18/return-to-exercise-helping-patients-to-overcome-the-long-tail-of-covid-19/ Returning to exercise with long covid in non-athletes
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4620334/ - a case presentation of Exercise-Induced Pulmonary Haemorrhage/oedema, discusses possible pathophysiology
- https://www.diabetes.org.uk/guide-to-diabetes/managing-your-diabetes/exercise/blood-sugar-levels - managing exercise and diabetes
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How to manage breathlessness
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Recording from 15 April 2021, when our specialist physiotherapist Phil Langridge gave a talk to our aspergillosis patient and carers support group on breathlessness.
-----Contents of video----
- 00:00 Intro
- 01:05 Meaning of breathlessness
- 03:19 When to seek help (Safety net)
- 04:09 Causes of breahlessness
- 06:53 Things that can be done to help with breathlessness
- 17:19 Techniques to help with breathlessness - Mechanics
- 21:44 Techniques to help with breathlessness - Positions for recovery
- 24:09 Techniques to help with breathlessness - Timing
- 29:27 Techniques to help with breathlessness - Worry
- 32:09 Techniques to help with breathlessness - Other
- 41:04 Take home points
- 43:16 Q&A
You can read more about managing breathlessness here.
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Indoor Air Quality at Home (NHS guidelines )
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Indoor air quality is of significant importance to the health of occupants of a building, be it a home or a place of work. There are multiple potential reasons why the air in a building can become unhealthy and many possible sources of pollution, some of which can be relatively easy to remove while others are not. In fact, indoor air is often more polluted and much more damaging to our health than outdoor air.
This problem was highlighted by the Royal College of Paediatrics and Child Health (RCPCH) and the Royal College of Physicians (RCP) in their report published in 2020. In it, RCPCH & RCP highlighted the impact that poor indoor air had on the respiratory health of children of all ages including asthma, infection, rhinitis and even low birth weight and difficulty sleeping.
The report indicates that increased and better use of ventilation is key to preventing harm to children's health but not at the cost of household warmth.
The inside story: Health effects of indoor air quality on children and young people 2019
Read full details of the report here
Importantly this call for attention to indoor air pollution was met by the UK government health advisory body the National Institute for Health and Care Excellence. An extensive review of the field led to the publication of the new NHS guidelines intended for a range of professionals and audiences:
• Building control, housing and maintenance staff
• Healthcare professionals
• Public health professionals
• Planners and regulators involved with residential developments
• Architects, designers and builders
• Private property managers and private landlords
• Housing associations
• Voluntary sector
• Members of the public
These guidelines now guide a GP for example on what best practice might be if they have a patient asking them for help with damp in their home.
These guidelines are an important improvement for the UK as prior to 2020 clinicians really had little help on what might the best way to advise and help patients. Even though they may believe that a patients' home is damp they would not have known where to get help with improving the home, might not have known what the expected symptoms might be or how serious the impact on health could be. These guidelines provide NHS approved guidance on all these subjects and many more including advice for both homeowners and rental properties.
If your GP or any other health professional is struggling with how to help you, direct them towards this document.
NICE Indoor air quality at home guidelines
Other sources of information on damp homes
European Lung Foundation
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