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Beating Bowel Cancer Community

General Discussion


Dexamethasone & An Apology

Hi Just wondering if anybody else has had extreme side effects to the Dexamethasone steroid, which is given with the chemo. In the past, for the the first 3 days when I have taken the Dex, I have felt quite manic and energised, probably not helped by no sleep and then when I stop taking them I crash and feel quite emotional and wiped out. However, on this cycle (hopefully the last) the effects have been horrendous and frightening. I ended up hallucinating, completely disorientated and hysterical and had to be mildly sedated (my poor family!). I think it happened because of extreme fluctuating cortisol levels. Has anyone had an experience like this or know anything about it ?

The Apology; A couple of days ago, in a manic Dex moment I, I naively posted a piece on the forum about Targetted Therapy, which in my befuddled brain I thought was interesting and factual but a couple of people reported it and it was quarantined ( rightly so) I want to sincerely apologise if anybody read it and it caused upset, alarm or confusion. I feel dreadful and it made me want to leave the forum as I couldn't bear the thought I had done something that may have upset someone.

Wishing all you amazing people a lovely weekend and sending lots of positive vibes. :x::x::x:


@Bear G Thanks for your kind reply, it made me feel a bit better. I have spoken to my team before about the Dex and the effects/crash and they were keen for me to continue as I suffer quite badly with nausea. To be honest I quite liked the energy boost it gave me but this last episode was so extreme and frightening with the hallucinations and disorientation that I never want to take it again. My family have now given me the nickname 'Steroid Jane' and I am gradually beginning to see the funny side of it. Hope all is well with you. You are doing a fabulous job for the charity.


@eyeofthetiger i personally didnt see your post with said article but please dont beat yourself up about it anymore and totally wipe thoughts about leaving the Forum away, regardless of the reason you posted, its like everything in life, were all individual and somethings we take and somethings we leave, you have been an amazing support on the Forum 😊 Like the good Frozen song says "Leeet it gooo, Let it gooooo" and move onto the next experience :x::x:


And I'm here to reassure you too. @eyeofthetiger .Luckily I never needed steroids....sounds horrendous, but morphine addles my brain so I imagine that steroids would be worse. To be honest, I was a bit surprised that you posted something potentially controversial, so it is great to have an honest explanation. I really hope that, very soon, you will be able to laugh about it.

Anyway, as Bear G says, the forum is well looked after and is a place where we can all investigate or research safely, but new things appear all the time so we must be open minded.

Hope you are feeling better today! Lots of supportive hugs :x::x:


I didn`t see your post either @eyeofthetiger, like @Sparkles says don`t beat yourself up! This journey is hard enough without being hard on yourself unnecessarily. Chin up lovely you have nailed stage 4 and finished mop up!! Time for some end of chemo celebrations :x::x::x:

margaret ensor

Don't worry. Nausea is really terrible. I am about to start new bout of chemo for secondary mets. The first time I had a anaphylactic shock on oxy so only had pills. I was terribly sick but too scared to take the anti sickness pills after what had happened. This time I will ask but very scared about effects. Nausea versus bad effects!! Continue to move forward. Stay positive. Margaret


I have never felt good with Dex but it sometimes does a necessary job. The last time I was on Folfox I managed to have it with the infusion but then not take the tablets, but please only experiment with changing in consultation with your team.

It was initially prescribed for me with 5FU (my current maintenance treatment) but I had it taken out and haven’t needed it.


Hi @eyeofthetiger , I was told to take two doses of Dexy for the three days after my first cycle and that was a craaaazy few days. I couldn't sit still, couldn't sleep, couldn't read, so I decided to just reduce the dose to one a day on subsequent cycles, and then supplement that with another anti-emetic I was given; Domperidone, or "The Don" as I call it.

As far as I'm aware The Don is not a steroid and he doesn't come with any of the side effects I get on Dexy. In fact, compared to everything else they put into me, it seems like the most benign drug I'm taking, and does a fine job of keeping nausea at bay. Its undoubtedly weaker than Dexy (the dose is three a day or whenever you feel nauseous) so it depends on individual circumstance, but frankly I'm close to dropping Dexy altogether.

If your nurses haven't mentioned it, it might be worth asking, and might help you reduce Dexy to a manageable level (or drop it altogether).


Hi @eyeofthetiger as the other moderators have said please don’t apologise for your post. I was also on Dex and had the crash, and found I was extremely tearful. My team did reduce the dosage which definitely helped. I also found I was very wakeful, which also caused me to eat in the middle of the night. I took a liking for mini bagels lol. Hope you get this sorted out, love D :x::x::x::x:

Polly 1

We worked out that C was getting enough Dexys on chemo day by infusion and was also expected to have 2 tablets at 3pm while he was still connected up. He decided to stop these 2 tablets after a couple of cycles and was OK. He also stopped the 2 he was supposed to have on the morning of day 4.

So he just has 4 on each of days 2 and 3 and has been OK so far. He does have the full dose of Ondansetron but hasnt had to open his Domperidone yet. He hasnt asked the unit which I suppose maybe he should have done but he does normally suffer from Dexys crash which hasnt been as bad since he reduced his dose.

He is still very loud and talks very fast (well he is a Brummie!) on days 2 and 3. When he was on Folfox in 2013 they changed him to Emend and took him off Dexys which was much better but he is managing OK so far on reduced Dexys this time.


My husband has 4 x 2mg for 3 days starting on the day of his infusion, he was advised to take all 4 in the morning so they didn’t keep him awake and so far that has worked, he does have the crash but it’s only been for one day. Funnily enough this cycle I was also on steroids the same time as him for Asthma issues which gave us a rather shouty weekend but as we were both the same we did not notice it so much :)


Thanks everyone for your kind replies. As a result of this Dex episode and some other symptoms I have, I am now being referred for tests for a possible adrenal gland disorder, which may explain why I had such an extreme reaction to the Dex. My mum has Addisons Disease, which is an adrenal gland disorder and has to take medication to help manage her cortisol levels, so now thankful to the Dex for highlighting that I might also have a problem. Sorry @Mrs2017 but I did have a little giggle thinking of you both zooming around on the steroids, oblivious of each others shoutyness! A small price to pay if it does the necessary job :x::x::x:

Bear G

Sorry to hear about the potential problem @eyeofthetiger but it’s great news that your team are on top of things for you
Big hugs


I was on 4x2 Dexamethasone following each chemo session. They seemed to have little effect on me other than to give me violent hiccups :):)!!


Hiya @eyeofthetiger I totally identify what you said about your reaction to the steroids. They sent me loopy. On my first cycle, for 4 days I was manic, high, experiencing euphoria, only sleeping a few hours a night. On the 5th day (no steroids) I experienced the crash, but worse than that was the horrific hallucinations. Lying in bed that night I woke my husband up and asked him if he was experiencing floating off the bed. He said he was too. We clung together for comfort as the whole room swirled around us.

Some time later I woke up and realised that experience had not in fact been real. However I then went on to have further 'waking hallucinations' throughout the night. They were not simply vivid dreams, they were full blown, real experiences. By the morning I was totally strung out and distraught I actually thought I had experienced some kind of mental breakdown.

Phoning the chemo helpline the nurse agreed I had experienced some kind of psychotic episode caused by the stopping of the steroids. They agreed I could in future try to taper off the steroids, rather than stopping suddenly. My last cycle (4th) instead of taking the pills at 4 a day for 3 days, I took them 3, 2, 1. This works for me. It was something I had to work out for myself..... my oncologist had given me permission to 'play around with the steroids' but nobody gave me advice as to what to try. A member of my palliative care team had told me that the tapering off of steroids is what they would normally do for anyone taking steroids for more than a week (rather than a sudden stop).

I understand the steroids are given to help the body combat the effects of the chemo however I really do wish I had some warning/understanding of the potential effects of the steroids beforehand.
This is one of the reasons I have found this forum so invaluable. When my hands were so painful for 4 days last cycle that even holding my toothbrush was a problem, I knew it was hand/foot syndrome. Because of what I had read here. I had my wonderful hand cream Udderley Smooth already (recommended by forum members), and I didn't panic as I had read here that my oncologist may reduce my chemo dosage to help. Which he is going to do this coming cycle by 20%.

Am so glad you posted this, it really helped me not feel so alone in potential 'going mad on steroids' scenario and am also really glad that your team are on the case and trying to work things out for you!

Loving smiles - Wendy :x:


@Wendywood Thank you so much for replying, which helped me feel not so alone in 'going mad on steroids'. My worst episode was when I tried to remove the smoke alarm from the ceiling because I thought it was a spy camera!!! I can laugh now but at the time it was very real and frightening. My mum has had a couple of similar reactions to the steroids and she has both thyroid and adrenal conditions, which makes me think it might be somehow connected. I am glad you have managed to sort out your dosage levels and will let you know after my tests if they find anything out that might be helpful. Hope your treatment goes well and we don't have any further issues. Take care :x::x:


Lol @eyeofthetiger you just made me chortle so much.......hahaha spy camera in the smoke alarm! Yes it's funny now (interesting how our returning humour is a good sign of feeling better), but can totally understand how real and scary it was at the time. To be be honest the damn things do look like spy cameras at the best of times!!!!
Will be very interested to hear the results of your tests. Good luck! :x::x:


@eyeofthetiger I didn’t have this with the dex but my team switched my meds for nausea because I was suffering badly and put me on aykensio ( don’t know how you spell it) but I suffered what can only be described as mild manic episode. I wrote pages and pages of things, incessantly talking, over energised feeling impulsive and signing up for things that I just wouldn’t do ...... my oncologist was quite shocked by it but it was a rare side effect of the drug when she looked! Thankfully I only had a couple of rounds so I went back to emend and just suffered the nausea....,.
It is scary though - hope they find out whether it is due to other issues you have.
How much more chemo are you having? :x:


Hi @Caraeliz24 Good to hear from you. That sounds very familiar with the writing of pages and pages and doing impulsive things. I was one Crazy Lady but thought I was perfectly rational! I suppose with any medication the majority of people have none or few side effects but there are rare cases (like us) where the side effects are more serious. I am having a scan this week so depending on the results this may be the last chemo cycle or they will be looking at Plan B if there is evidence of cancer. How have you been since the liver surgery and are you still having chemo? :x::x::x:


@eyeofthetiger I am doing very well at the moment thank you. I finished chemo a few weeks ago and my scans were clear so I’m on a break until May when I’ll be scanned again and fingers crossed remain clear. However, fully prepared that cancer might return at somepoint. Also started screening for my lynch syndrome.


@Caraeliz24 Brilliant that you are clear and doing well. I feel the same about recurrence 'preparing for the worst but hoping for the best'. Hoping you get positive news about the Lynch Syndrome (not sure what that is but going to read about it now). I think I am a bit strange as I actually find cancer fascinating even though it is so destructive. Lets get out there and enjoy this time :x::x::x: