Hi Richedw10, 

I'm sorry to hear about the side effects you've been suffering with the steroid prednisolone but I'm glad you've decided to have a chat about this with the doctor to see if you can reduce the dose or slowly come off it altogether.

If I have done my search through our forum correctly, I think I have found that [@puppyknuckles]‍ and [@sadcat]‍ have taken this and the mums of [@Serapine8]‍ and [@piplish5]‍ had this as well and hopefully some of them will pop by when they can to share their or their mum's experiences with you.

Do feel free to give our cancer nurses a call if you'd like to chat with them about this as well. Their lines are open Monday - Friday between 9a.m - 5p.m and can be contacted on 0808 800 4040.

I do hope you're able to find a solution to your problem soon richedw10.

Kind regards, 

Steph, Cancer Chat Moderator

Hi Richard,

Sorry to read about your side effects, the good news is that they will disappear once you come off the steroids.

I was on Prednisolone for several months whilst on chemo - it was hard to tell what was causing my side effects as I was on so many drugs at once. Almost five years later I'm still here against all the odds - the chemo worked - though I now (at the age of 60) have a couple of cataracts which I'm told are probably a permanent side effect of the prednisolone. A rare side effect I know, and I'm not complaining, but another reason to discuss how long you need to be on steroids with your doctor.

Good luck! 

Dave

Hi Dave appreciate the reply.

My problem is as an recipient of a new heart I’m on the steroid as a source of anti rejection, therefor there is no end in sight as far as coming of the steroid is concerned. I’m treading a fine line when it comes to the drugs I can/cannot take. I will have a talk with my doctor though, if I can’t come off then completely atleast lower my dosage. May I ask what dose were you on and did you suffer from so called “moon face” or weight gain ? I’m on 10mg daily which I’m told is a very low dose anyway. However if I can get down to 7.5/5 mg I may see some improvements. 

thanks again, Richard

Hi Richard,

I didn't have the moon face side effect and the chemo I was on was pretty aggressive, so I struggled to avoid losing too much weight. I can't remember what dose I was on at the time and I've thrown all the old packaging away. 

Crikey, you don't do things by halves, do you? I hope you get the dosage sorted out soon.

Best wishes

Dave

Hi Richard

My mum was on Prednisone several times for breathing related issues. For her, she developed a ravenous apetite which caused her to gain weight. She was always very slim, so a bit of weight gain for her wasn't too bad, but it did did mean that she wasn't able to fit into her clothes. Luckily, she was only on them for usually two weeks at a time, so would then lose the weight after (lose the apetite really). She hated that drug though. It caused bad mood swings and other personality changes. But there was no denying that it helped her, and there didn't really seem to be any alternatives. In fact, I think when she mentioned to the doctor when in hospital that she would refuse to take it, they told her that she could just leave then - untreated!!!

I hope you find some answers and alternatives. Sorry I can't be more help.

Hi, I was on 40mg for a lung problem, it took 6 months to come off it. I had the moon face for a long time, very depressing, also the fat at back of neck. It went back down once I came off them, I also had the cataract problem as well. Horrible drugs but they do the trick. I'm now on 55mg as I'm having chemo atm but only on it for a week thank goodness, then off for two, no moon face this time, this was the one drug I was dreading more than the chemo as I've been on Prednisolone twice now, I was supposed to be on 70mg which I nearly fainted at the thought, but once they weighed me put me down to 55mg, it is helping me stay well and coping with the chemo. I hope you get taken off it soon as I can relate to what you are going through. Take care