To think that surely something could be done for my dad?

[Bogeyface]

He is currently on a bender thanks to his steroids, not an alcohol bender, its just the word we use to describe these episodes. He has a recurrent chest issue that needs high dose steroids and they send him.......well batshit crazy is about the most accurate description tbh.

Last time it was like he was on speed (I imagine, never having taken it myself!), he didn't stop, he was always up and doing and rushing around like a loon, he barely slept for 5 days. Now that in itself wouldn't be too bad, but he is profoundly deaf and partially blind so it resulted in him hurting himself a lot, and having a massive dizzy spells where he almost fell down some concrete steps. He wouldn't calm down, wouldn't listen and it was exhausting for mum as she had to follow him around the whole time. I had to do their shopping, do their errands and "dad sit" the 2 days she was at work as he couldn't be left alone, which wasn't great as dd is only 18 months and he didn't see her a couple of times. Thankfully because I was shadowing him, she didn't get hurt but still.....

This time he is horrible. A nasty vicious spiteful person, my mum called him a bastard, which sounds harsh but if you had seen and heard him :(. He made me cry last night and then laughed at me, he was so horrible. And if you knew my dad you would know how out of character that is. It would be like seeing the Queen pissing in a bucket on Pall Mall and wiping her arse on a corgi. He has scared my mum a couple of times with his temper, she didnt think he would be violent, but thought he might end up hurting himself as he was steaming around (blind and deaf remember). I think part of the problem is the shock at seeing the worlds nicest man behaving like that towards the people he loves.

He can see it afterwards and apologises, but they just put up with it. I am trying to convince them that they must ask the GP if there are different drugs with less side effects but mum says "Well if he needs them then I just have to put up with it". But she is in tears a lot the week or so he is on them, and I can see that it is destroying her to see him like and to cope with it.

Please tell me the IANBU to insist on going with them next time, or at least making mum promise to tell the GP what he is really like on the drugs? Do all steroids do this or could their be a better one for him?

They are both 63 btw.

Get him back to the GP. There HAS to be an alternative. It sounds hellish, I am so sorry petal. Must be awful for your dad too when he realises how he has been with you. Nope, not good enough, back to docs!

sounds awful. is it prednisolone (sp) ?

could you film him (dreadful I know) to show the GP or consultant?

ignore typo's (their? there!) am knackered!

Thank you Welsh and Boys

Not sure what the drug is, will find out in the morning.

Thankfully, today was the last day of this course, so he should be ok in a day or so. Tonight was awful, he was baking at 9pm, which is odd in itself, he is normally asleep in a chair by then! But he was making 3 lots of bread, all at once and then decided to unpack the new Xmas decorations (in the kitchen!) aswell. Mum was practically in tears when I left, because although we had sorted out the chaos, he was then in a bad mood and she knew she was in for another night of him bombing around. I have told her to call me if she needs me, but I bet she doesnt :(

She hates asking for help at the best of times, but since DH got made redundant, she wont ask for anything, daft mare. Will be there first thing the morning, and might take him shopping with me (wish me luck!) so she can go back to bed, but its not ideal is it?

I will talk to her as soon as he is back to normal, and see if she will come to his GP with me and tell her what he is like, so next time she doesnt prescribe them again.

Thanks for the info about the drug you mentioned. Just googled it and the crazy behaviour is actually one of the things mentioned for calling the doc ASAP. I wouldnt be at all surprised if it is that one.

Will show mum, she wont just put up with it if I show her that I am sure.

Try to convince her that it is her duty to report side effects. This is how we know what drugs do. She will be protecting other vulnerable people by telling the GP what this is like. Would that help to convince her?

That's an excellent point Mrs, and it may well tip the scales. Thank you :)

Will be taking her out for lunch when he has his head on straight again, and will talk to her then.

You are most certainly NBU. I wish I had some medical insight to offer, but sadly I don't. However I would be most surprised if his GP didn't have a few other tricks up his/her sleeve. It's very rare that there is not an alternate drug and, if there wasn't, one would hope he/she would have something he could take with it to combat the manic behaviour at least.

I can't imagine having to see my father like that . How very sad for all of you, especially your poor father who must feel mortified. I really hope you manage to get it sorted.

Ok - do NOT google but one of the particularly nasty side effects/extreme reactions to steroids is something called steroid induced psychosis - if he is already on a reducing dose, then 'hopefully' symptoms will start to ease but I don't think you can wait until you take your mum out for lunch in case - I think you need to show her this thread and tell her that she needs to speak to his GP first thing in the morning. The worst cases I have ever seen involve patients becoming completely confused and wandering off - his medications need to be reviewed urgently.

Hope you get some help OP.

Bloody hell, sounds like hell!!

I have been on those steroids before, on 8 a day, I don't really remember much whilst I was on them though. I was very ill, and only on them for a week but I don't think I was anything like that, but every person is different and reacts differently. Side effects do need to be reported so they can be changed if necessary.

Good luck, I hope something can be done for your dad and therefore your mum (and you) too.

THank you mullered, but he took his last dose this morning and wont need them again for a couple of months, hopefully. I will talk to her tomorrow though and if it comes to that, make an appointment with his GP myself and tell her what he has been like.

Eee it isnt normal is it? They are a bit of the "doctor knows best" generation, so dont really question anything and just put up with it :(

Has he been on a reducing dose Bogey ?

OK so you should never tell me not to google things! I wouldnt say that he is as bad as the SIP but he is close. He had a 7 day course, and I dont know if it was a reducing dose, although I suspect so as the first day he had to take 6 and today he took 2.

I have thought about it and I wont talk to mum, I will just call his GP tomorrow and make an appointment to talk to her. Mum will um and ahh and put it off, and this is too serious for that.

I am so glad I posted, I had no idea how serious this was, thank you so much :)

I knew you'd google! But yeah - I think you're doing the right thing if you can get to speak to the GP. Hopefully you'll get a better solution - it's not pleasant for any of you

No, it isn't normal at all. I was on 8 a day for a week, and was nothing like that.

Is he on other medication? If so, they could be causing a reaction taken both together, especially if both can cause side effects like your dad is experiencing. I hallucinated really badly and went a bit loopy after 2 of my medications causing a reaction.

Quick update.

Yes it is prednisalone, 6 a day for 7 days, no reducing dose

Mum is as sharp as a tack and wanted to know why I was asking, so I told her what I have found out (well, an abridged version) and she agreed he needed to get back to the GP straight away. I am going with him, even though he has insisted he can go on his own, because as mum said, he doesnt realise how bad he has been.

Thank you all so much for the advice, we wouldnt have known how potentially serious this could be if I hadnt posted on here. I owe you one :)

How do you communicate with your dad, Bogeyface? Are there frustrations around that which are heightened when he's on steroids?

There isnt a problem with communication as such, just that he is so manic that he doesnt stop and "listen" to anyone.

He has hearing aids so he can hear some stuff but mainly he lip reads so it isnt too much of a problem at the moment. We are learning deafblind signing as his sight is deteriorating.

When he is like this he doesnt really take much notice of what anyone else is saying, he just goes barrelling along in a world of his own.

Oh, that's good. Have you had support from somewhere like Sense or Deafblind UK? They might be worth contacting for advice if you haven't already.

Bogeyface. For a short course of pred, you don't need a reducing dose. They have quite a long half-life, so it will take a day or so for him to come down to earth properly, after the final dose, then he may feel very tired and out of sorts.

I have regular courses of steroids due to asthma. The first course I took, gave me a steroid psychosis. we'd just moved house, and I was convinced the fridge was sending me messages from our new neighbours. I ended up in the police station at 11pm, waving a bit of the fridge around, shouting, and still in my pyjamas - they had to get the MH team out to sedate me

I can still remember the desk sergeants face, and it was a long time before I could go in the fridge without feeling a vague sense of unease

Second course I took, I was in resus in A&E, so they whacked me full of hydrocortisone, admitted me and started me on pred. There was no other choice, because I was so poorly but because I was in hospital, I was still ramped up and revving, but I got support and medication to help me sleep.

I've had several courses since then. I've never had another psychosis like that first one. In part, it was due to not knowing what was happening to me, and not getting enough rest - it was really frightening!

Now, when I need steroids, they also prescribe something to help me sleep at night, cos even some rest helps break the cycle, and makes it more manageable. I go through my diary, cross everything out, I keep a low profile, but invite friends round for company. My children also pick up the slack a bit, and don't invite a cast of thousands round for tea. I let all my friends, ex-dh etc know I am on steroids, and they all keep an eye out for me. I also have the number of the MH team, so I can ring them, let them know, and we keep in telephone contact for the duration.

For me, I don't sleep, I feel like I can't stop moving, it is very difficult to hold onto my thoughts - like trying to nail a jelly to a wall - but with a bit of sleep, support etc it's not too bad. And now I know what to expect, it makes it so much easier.

Some people do have extreme mental health reactions to steroids, and every time can be different. If you look at the info leaflet that comes in the box, there is a big warning about this. It would certainly be worth chatting to the doctor about this - depending on how he is, it might be possible to rearrange dosing, maybe prescribe something to help counteract the side effects etc etc.

please do go and talk to your doctor about it - if you want to PM me thats also fine!

We just got back from the GPs. As expected, dad is crashing down a bit, he always does the first couple of days after his last dose.

He definitely had SIP and the GP says that they will lower the dose in future to use the minimum amount possible to do the job. He also said that depending on his reactions they may prescribe an anti-psychotic as well although he said that they dont want to do that if they can control it with the dosage.

He said that the last case he saw was 15 years ago, despite prescribing steroids all the time. But as I pointed out, my dad has been suffering with this for a while because he didnt know that it wasnt normal, so other patients could be doing the same. I think I made my point!

Thanks again, as I said above, we would never have known about this had I not posted so I cant thank you enough :)