My IBD Story: Prednisolone And Its Side Effects!

My IBD Story: Prednisolone And Its Side Effects!

Hey everyone!

A continuation of my IBD story today as you guys seem to enjoy reading about my pain! Haha, I’m kidding, kind of… There’s been quite a lot media attention recently about the effects of steroids when used on the body due to Dynamo bravely sharing part of his journey with Crohns. I thought because of this it would be a perfect time to write about my experience with the steroid that I’m on, named “Prednisolone”. There are a few other main types that people with chronic illness involving inflammation are prescribed like Prednisone and Budesonide but I seem to react okay to Prednisolone so I’ve stuck with this since diagnosis.

So, starting from the end of my diagnosis which you can read here and here, I was prescribed Prednisolone. To begin with I was prescribed an 8 week course starting at 40mg per day, reducing by 5mg per week until eventually coming off of the steroid and hopefully calming my flare into a state of remission. Sounds really simple, right? It really wasn’t. I’ve always hated any sort of medication, even down to the point of not wanting to take paracetamol. I’ve just always had a weird thing about putting any sort of medical substance like that into my body.

I started the course of steroids and it took about a week and a half but they did really help me feel better symptom-wise. They essentially calm the inflammation in the body so they started to relieve my pain, calm the frequency of my toilet trips and actually give me quite a bit energy. I remember one Sunday morning I got up at 6am, swept the downstairs of the house, peeled the potatoes for the roast dinner and made my mum and I egg and soldiers for when she woke up, she thought it was brilliant! I also managed to go on two holidays on quite a high dosage of Prednisolone as I was feeling well enough to do it.

Taking these steroids also completely cleared up the eczema on my hands which I have struggled with since I was born. They made my nails grow and strengthen like crazy too which was nice as I’ve always had flimsy nails and horrible hands. However, there are a hell of a lot of side effects. There is a huge list you get with them just to warn you of everything that could possibly happen that includes pretty much every part of the body.

Steroids quite honestly made me feel like a bit of an alien and all over the place when I first started taking them. They gave me random heart palpitations and shortness of breath. They made me quite agitated, emotional and depressed when I was I on a higher dosage and they make you want to eat constantly. Like literal constant hunger, your stomach is like a bottomless pit, nothing satisfies it. I was also sleeping about 5 hours a night, if that. I remember on my 21st birthday, absolutely sobbing my eyes out whilst my mum and Jake were singing happy birthday to me because I just felt so sad. But without taking them, I wouldn’t have even been well enough to leave my bed on my birthday so it’s a massive catch 22.

I realised as I started dropping my dosage too that my symptoms were gradually creeping back and making me feel more and more unwell, even at as high as 30mg. Because of this, I was advised to control my own dosage with how I felt and only drop them if I felt well enough to function on that amount. I was also on another drug called Pentasa alongside them at first but it clearly wasn’t doing anything beneficial. At this point I was back to work too so I couldn’t take many risks as I didn’t want to go off sick again.

Then in July, I had a big flare up and was supposed to be admitted into hospital. The whole ordeal was a bit of a shit show including being made to wait around for hours waiting for a referral I was supposed to already have had and quite honestly being treated horribly by a nurse. I didn’t want to be left in a place like that so I refused and went home. I was advised to up my steroid dosage to 60mg and rest to try and treat it. This is when I started to show the outside effects of the steroids, developing my “moon face” as they call it.

There are a few reasons this happens but the main reasons are swelling, water retention or fat re-distribution. I get this on areas of my body too and quite bad bloating so the sizes I stock in my wardrobe are quite literally anything from 10-16 depending on what kind of day it is. I can never control it either, I could eat nothing for a week, drop 5 lbs and wake up looking bigger because of the steroids. All of this is supposed to go away quite soon after you stop taking them though, which I have not yet experienced.

Due to the hunger steroids cause and trigger foods from the disease, quite a lot of people put on a fair bit of weight when taking them. I’m not just talking a stone, I’m talking 3-5 stone, the hunger cravings can be that strong. I’ve put on a few lbs since diagnosis a year ago but because I dropped so much before I was diagnosed, I’m still a lot lighter than I was. I’ve had to have a bone density scan too as long term use of steroids can really weaken your bones and affect your joints. Although I’m lucky as I’ve only started experiencing aching in my joints since starting my most recent treatment called “Infliximab” which is a common side effect of it.

I’ve been on Prednisolone alongside 5 different treatments that haven’t worked now. Prednisolone as far as I know has been the only thing keeping me moderately stable over the past year so I am glad it exists but at the same time I would do anything to be off of it. When trying to taper off of Prednisolone, a lot of people also develop skin problems and acne which I am also suffering with at the moment. I did show it in a recent post here which you can give a read if you like. It really has affected my confidence as I’ve never really been a spotty person, even as a teenager and now I’m left with scarring on my face from them too.

I am currently sat at 20mg daily and every time I try to taper any further my body has a bit of a meltdown. Even on 20mg I’m still suffering with my symptoms and pain but I’m just about able to cope with it and I really don’t want to be on a higher dose. After almost a year, it gets a bit old not being able to sleep well and waking up every morning with your body pining for them.

With any luck, Infliximab will be the right treatment for me so I can gradually get myself off of them soon! I would very much like my thinner face, a good nights sleep and my concentration back. Have you experienced steroids for any reason?

’Til Next Time,
BTB Xx
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20 Comments

  1. Miranda
    4th May 2018 / 9:28 am

    ???? xx

  2. 4th May 2018 / 11:17 am

    I hated being on steroids – but they really do help with symptoms. I was on a very heavy dose when I was first diagnosed as my weight had dropped to 5 and a half stone. I was 14 so being at school when my body and face were doubling in size wasn’t fun at all.
    Pentasa did basically nothing for me too. Infliximab was great, I used to really suffer with sore joints and it actually helped with that along with my stomach issues but after a while it stopped working. I now inject Humira every 2 weeks which seems to be helping. It’s really nice to hear someone going through the same thing, I love how open you are about it all and it will really help people who have just been diagnosed. For a fairly invisible illness it’s good to give people an insight that crohns isn’t a walk in the park.

    Jenn

  3. 4th May 2018 / 7:28 pm

    I’m stuck at 20mg at the moment too. Luckily the only thing that’s bothering me most is the moon face…

    I take Vitamin D tablets to help protect my bones a bit, are you on anything?
    I also have to have bone scans every 2 years…

  4. 4th May 2018 / 8:03 pm

    I’m glad that you are talking about IBD medication, it’s something that isn’t spoken about enough.

    Lucy // lucyturnspages co.uk

  5. 4th May 2018 / 8:09 pm

    I’m so sorry for the effect it’s had on you. These really make me appreciate having minimal health problems. Thank you for sharing this, I hope you get better soon.

  6. 4th May 2018 / 8:17 pm

    Thank you for sharing your story, you are brave and I hope things improve. P.S your hair looks awesome!! xo

  7. 4th May 2018 / 8:19 pm

    I’ve never experienced having to take steroids so this was really interesting to read about and learn about. I’m so sorry that it’s had such an effect on you though, it does sound like it can be quite scary at times! I hope the Infliximab work for you as you would like to!

    Amy,
    https://creativenails.uk

  8. 4th May 2018 / 8:30 pm

    Thank you for sharing more of your story . I’m glad the steroids are helping keep you somewhat stable and hope that future treatment/medication can mean you can lower your dosage and in turn help with the side effects you get.

    Melanie | http://www.frasersfunhouse.com

  9. 4th May 2018 / 8:30 pm

    This was such an interesting read. I’ve never had to experience steroids before so this really opened my eyes to how it affects the body.
    As far as the effects on your appearance, I always think you look banging on Instagram (your recent swimwear photos were bloody gorgeous!!) So don’t worry about it, girl!

  10. 4th May 2018 / 8:39 pm

    I never really knew much about steroids and their effects but it sounds like you have been through a lot Alice ?. You are so brave and inspirational for sharing your story. I really hope the the Infiximab works well for you. By the way, you look gorgeous in both photographs ? xx

    Bexa | http://www.hellobexa.com

  11. 4th May 2018 / 8:55 pm

    im glad they have gotten slightly better for you. Side effects from tablets have been a pain in my life too, it is so frustrating. This post was interesting to read and its brave of you to share your story! And you look absolutely BEAUTIFUL in both of those images, with a “moonface” or without! Much love xx

  12. 5th May 2018 / 1:20 am

    I never know how to say I enjoyed reading these posts because it feels like I’m saying I’m glad you’re ill which obviously isn’t the case. I’ve never had to take steroids luckily (and thankfully because I’ve had bone density issues in the past). But as a fellow bloater (reasons unknown) I can fully appreciate the struggle of going to bed not knowing if/ which of your clothes are going to fit in the morning. My body really likes to randomly gain 10lbs in one day then just fall off again a few days later, can’t say I’m a fan. I hope you find a better solution soon x

    Sophie
    http://www.glowsteady.co.uk

  13. 5th May 2018 / 1:49 am

    Thanks for this entry! I work as a nurse and it really warms my heart when people truly understand how their medicines work – it’s like, yes, the patient education worked well. I started my birth control when I was 21 and it’s taken a toll on my body, tbh.

    Keep taking them as prescribed and don’t abruptly stop taking them. I’ve never been on steroids but my friend was when she was younger, and it discolored her teeth permanently. I hope that the new medication works better.

    cabin twenty-four

  14. 5th May 2018 / 6:07 am

    Major power to you for handling the medicine! There’s always pros and cons to certain medication and it’s so hard to find what’s right for people. You’re a trooper and sending you lots of positive vibes that the treatment will help you long term :). ♥♥♥

    exquisitely.me

  15. 5th May 2018 / 1:44 pm

    I avoid paracetamol too haha!

    I really hope infiximab works out for you! I haven’t had to take steroids before, but I have heard a lot about how hard it can be stop using them.

    Aleeha xXx
    https://www.halesaaw.co.uk/

  16. 6th May 2018 / 9:47 am

    Oh Alice, steroids sound bloody horrible! I haven’t ever needed to be on them before but my Dad has been on and off them for years with his asthma and I’ve seen how it can affect everything from his mood to his weight (he’s never had “moon face” but balloons everywhere else when he’s on them!)
    I hope these new meds work well for you lovely and admire you for sharing your story ❤️❤️
    Gaby xxx

  17. 16th July 2018 / 7:50 pm

    Wow! Even after having had Crohn’s for many years, handling all the medication can still be an issue sometimes….

    • blacktulipbeauty
      Author
      21st July 2018 / 6:19 pm

      It really can be, IBD is such a temperamental disease isn’t it!?

      • 21st July 2018 / 7:45 pm

        Omg! Yeah so true! The worst is when it flares during vacations!

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