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Navigating the adrenaline roller coaster that comes with taking steroids for autoimmune disease.

For those of us living with an autoimmune condition(s) there may come a time where Prednisone gets prescribed as a medication to bring a flare up under control.


This is a strong medication and depending on the dosage can have some pretty wild side effects as well as some very quick relief from symptoms that stop us from performing basic life tasks.


Over 22 years of living with an autoimmune arthritis - first diagnosed as Juvenile Idiopathic Arthritis and later as Psoriatic Arthritis I have had to take oral steroids (prednisone) multiple times as well as have cortisone injections. Every time has been different but I can safety say that I now have things that help dramatically with the side effects they bring to the party. In this article I am going to share my experience and offer some helpful tools that have made the times I’ve had to take it easier.



Firstly here are the common side effects one can experience from taking Prednisone:


  • feeling stuck in fight or flight mode (imagine adrenaline pumping through your body on and off all day)

  • Moon face (water retention held around your face suddenly giving you a very round appearance)

  • Swollen belly/limbs due to water retention

  • Racing heart

  • Anxiety

  • Depression

  • Flicking between both anxiety and depression

  • Heightened emotions

  • Feeling high (have to say I’ve had some days where I’ve felt like I was on something like MDMA)

  • And then feeling low

  • Fatigue

  • Insomnia

  • Nausea

  • Low appetite or massive appetite

  • Stomach upsets

  • Constipation

  • Osteoporosis (when taken long term)

  • Muscle weakness


Woah! when you read all those it's normal to question why would anyone even take these?...


Well the flip side is 95% of the time they are actually a welcome relief to many of the other symptoms someone with an autoimmune condition may experience.


For me I’ve been prescribed them when I can’t move my body or get out of bed or the pain is so bad I feel so miserable and depressed that I can’t do life. I weigh this up and take the side effects so that I can begin to move my body and get back to living because we came here to live right??


And after 22 years I have this amazing set of tools that mean I actually don’t experience many side effects if any anymore.


Here is what’s helped me in the times I’ve had to take steroids:


Compassion

Be nice to yourself first and foremost. Your about to throw some hefty medication into your body and it’s going to do what it needs to do to bring you some relief. There is no need to beat yourself up about having to take this. You haven’t failed or done anything wrong and there’s nothing wrong with your body it’s just on overdrive so in the midst of a severe flare I practice compassion, saying nice things to myself and doing enjoyable nourishing things.


Diet

Limit Salt: Water retention is a very common side effect resulting in puffy limbs and puffy face. Salt is not your friend here sorry. Limiting salt intake will drastically bring down that retention. Stay hydrated: Do this with electrolytes/coconut water/lemon water to help flush things through.

Cut out refined sugar: With the highs/adrenaline sugar becomes a problem eating sugar adds fuel to the fire leaving you feeling even more high/all over the place and “jacked up”. Whilst this might be fun for a few minutes the crash is not worth it. It really never is, I’ve tested this a lot so trust me.

Keep meals simple and healthy: The nausea is there when your liver feels over burdened so eating healthy to support that is key. I keep meals really simple whilst on prednisone sticking to boiled or roasted veggies, fruit, organic meats, eggs, whole grain and veggies. Pasta, white rice, bread, sweets and packaged food is going to add fuel to that adrenaline fire and not provide the sustained energy your body needs.


Taking medication with a substantial amount of food: Over the years I’ve realised a smoothie or a bowl of fruit is just not going to cut it for breakfast. Any day for me but especially when on prednisone. I find if I have a decent hearty breakfast my stomach is lined and prepped to take them and saves me from heartburn and/or nausea.


Supporting myself with supplements/herbs: Digestive bitters, milk thistle, lemon water, dandelion greens, beetroot, fresh veggie juices all help the liver out to flush things through and won’t interact with the medication. Please do check for interactions with any medications you take before taking any herbs.


Movement


Exercise is my go to for the anxiety and depression train. I do what I can when I can and focus on movement I enjoy. For me that’s aqua fit classes, walks in nature, swimming and the gym. Finding an outlet for that energy that anxiety brings is key and moving when I feel really down, unmotivated or depressed usually lifts me out, even if it’s just a little. Exercise also helps to strengthen bones and muscles both of which helps with developing osteoporosis and muscle atrophy.



Sweating


I do this by visiting my local sauna/steam room at the pools and taking hot epsom salt baths. This helps with any yucky toxic feelings I experience from taking them.

Routine. This is really important for me for combatting the emotional roller coaster and insomnia I experience. This looks like waking up and going to bed at roughly the same time each day and eating at regular times through the day. I also limit screen time in the evenings and pick relaxing activities such as doodling, reading a fiction book, a nice bath or an evening stroll.



Breathwork


When the racing heart kicks in I come back to breathwork every time. Usually I lie down as soon as it starts unless I’m in public then I might go to the toilets or somewhere private and sit quietly and I breath. Into my belly nice and slow and deep. And I just feel this. That’s it. No fancy practice except just breathing and feeling and the slowing of the breath begins to slow the heart and the mind bring me back into homeostasis.


Relaxation


Yoga nidra/meditation. These two things help switch me from fight or flight back to a parasympathetic state of rest and digest.


Time in nature


Whenever the overwhelm and racing thoughts kick in I leave my phone and head for the beach or forest. Within 30 minutes I feel lighter, more present and more connected.



Letting go


Of that to do list, those tasks around the house and making lots of life plans. The time will come for you to tackle those things but in the moments it all feels like too much practice surrendering to the moment and what you can do right now and let go of the rest.

Allow space for rest and flow


No two days are the same so you might feel absolutely crap one day but that doesn’t mean you’ll feel crap the next. Listen to your body. Sleep and rest when you need these are the top healing tools and so underrated. There’s nothing more important than your health so that to do list and work can wait. Often I find when I give in to rest I only need a couple of hours then I can manage another task yet when I fight it it persists all day and I accomplish nothing other than fighting myself.


I hope these help you to navigate the challenges that come when your in this medication. I would love to hear if you have anything else that helps you get through or if you have any questions reach out.


Sending love to all the autoimmune warriors out there x


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