Bad experience with steroid tablets

FormerMember
FormerMember
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Hi, I recently finished R-CHOP for DLBCL and I had a PET-CT scan last week (still waiting for the results, feeling mixed emotions, not knowing if I'm all-clear, yet, but the scan midway through my treatment was very good). When I had my R-CHOP sessions, all went well apart from a reaction to rituximab the first time and they gave me preventative meds earlier before it, all the other times. 

Im rambling a bit, here, haha! My actual question is about steroid tablets (prednisolone) - I was fine with the injected steroid during chemo sessions, i think it's called dexamethasone - but the prednisolone tablets that I had to take for 5 days after each session made me feel literally crazy and aggressive! The first time, I was just super-energetic and got loads of tasks done (very useful, prLaughingChristmas Laughing) but the effect each subsequent time got worse and worse. I was hard to live with and got very irritable and angry at the slightest thing, also very highly emotional, upset and offended easily. The effect was huge and I don't think I would be able to take them again, for anything. I know that this kind of steroid can be used for other conditions as well as cancer; and feel I would need to refuse them if offered them at all - for any condition. I wouldn't want to end up needing psychiatric treatment just because of a medication!!! (I have bouts of bad depression at times but have managed to cope with support and periods of antidepressants when needed) I have never had bipolar, although my grandmother did have it (vulnerability to it can be genetic but I firmly believe it can be prevented and I believe strongly in Christian prayer, having seen and heard of healings for many things, including bipolar) 

My concern is to be able to totally avoid prednisolone or similar things, if they can cause the kind of reactions that I had - does anyone know of alternatives or whether chemo treatment can be done without it?  I may not need more chemo, but have felt anxious about this subject and would like to know - thank you so much, blessings to all

  • Hi again Marieanne , 

    I had a quick look on Cancer Research to check my facts and yes, about 6 out of 100 people (6%) experience serious mental health problems when they take steroids. This includes depression.

    It says that you should let your doctor know if you notice any changes in your emotional or psychological wellbeing. Let your doctor know if you or any family members have ever had depression or manic depression (bipolar disorder).

    Rarely, steroids can cause a reaction called steroid induced psychosis. People can become excited, confused and imagine things that aren’t real. This can be frightening, but it goes away when you stop taking the steroids.

    So yes, this can happen and it could happen in the future. But you are through this part of the journey and let’s look for your scan results to confirm this and you can move on.

    You have been through a lot during treatment and yes some parts of the journey, most often the the worst parts will stick around in our mental filling cabinet.

    But could I suggest that you are stressing over something that may never happen and even if you end up down that road where steroids are mentions you have the talk with your team and you work out a path forward.

    Let’s look for good scan results.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember in reply to Thehighlander

    Thank you - yes a lot of things have been on my mind after finishing treatment! The steroid (prednisolone) issue was a big one; oddly, the injection that they gave me on chemo days made me feel great, it was just the 5 days of oral ones that sent me crazy. Very strange. There is bipolar in my family (maternal grandma) also a lot of people on my mum's side are autism spectrum - a lot of ADHD I think! I'm diagnosed with asperger autism but I definitely think ADHD is there as well. The last thing I need is hyping up! Laughing I'm looking forward to getting a clear scan, hopefully and putting all of this experience behind me. I should definitely have told the hospital about my steroid experience, I just assumed at the time that everyone had a bad time with them - I will speak up, in future! Thank you for always replying and helping :) 

  • FormerMember
    FormerMember in reply to FormerMember

    Yes the steroids are very naughty, I finished my chemotherapy in February but it certainly hasn't finished with me! Still got numb toes and a toe nail falling off lol. Latest thing is a rash after getting sun sensitivity, clearing up slowly with cream from doctors. Allan