Prednisolone

[Keemo]

Hi my husband was put on 25 mg of prednisolone for 10 days then reduce by 5 mg every 5 days wasn't doing him anygood was down to 10 doc said just stop them but I said no he would get withdrawal symptoms he's so weak now with lung cancer and COPD sleeps in chair day and night tried him with bed downstairs but after 3 nights went back to chair I sleep on seetee because he's up a lot in night ,my question is now I've got him down to 5 can they be stopped I know doc won't give him anymore but I'm on the same ones and have spare 1 mg should I give him some 1 mg to finish with ,thank you .

[PMRpro Ambassador]

It's fine - actually he could have stopped at 10mg because he'd only been on them a short time.

So sorry to hear that - it's hard. Been there, done that. We're always here if you need a rant. Are you in touch with Macmillan and Marie Curie for support? MC nurses will come to support you at night - you can't do 24/7 without help, I was up 3 or 4 times at night with my husband and that was awful. Awful as it sounds to say it, it was easier once he wasn't able to get up. Did you have a hospital bed? An ordinary bed is hopeless.

[Keemo in reply to PMRpro]

Hi yes sent hospital bed he didn't like it so got a single one down no good ,he sits double over a lot in night and sleeps like that says he can breathe better,in bed he always had 3 pillows but starts to panic with breathing ,he missed his hospital appointment November got one next week I'm hoping to get him there even in his PJ's he's not been dressed or out the house for over 2 MTs we've just had stair lift in for toilet also got commode it's even to much for him to go in shower even though nurses offered so I give him a wash down , McMillan got InTouch when he was diagnosed in June got him attendance allowance thru never heard from them since he had occupational therapist in touch sorting things out for us and nurse calls , carnt give him anything for his breathing only inhalers ,thank you for your reply yes Ile stop steroids he would have been better on antibiotics sorry for going on a bit not getting much advice of doctors x

[PMRpro Ambassador in reply to Keemo]

Go on all you need - it affects your PMR/PMR affects what you can do so it is all relevant,

It is all in a mess everywhere I think and my problems were in the first year and a bit of Covid so it was total chaos. Contact Macmillan again - you also have to be proactive, if you are quiet they think you are managing OK. It is all too true that the one who shouts loudest gets the attention. I didn't even know if we had any financial help here - they finally assessed it after he died and the money was paid once his will had been through the equivalent of probate here, over a year later, We had been turned down once before so I was scared to arrange too much help.

I don't know if patient transport is available these days, it is worth asking as he obviously can't use public transport and needs so much assistance it should be an ambo.

[MiloCollie]

such a hard time for you I’m so sorry. But YES shout for help in all directions. X

[whitefishbay]

Sorry to hear this. Such a hard time and with no help.