Prednisolone

[Pinkypie2018]

Can coming off steroids make you ill? Tomorrow is my last day taking them and last week once I tampered down to 5mg a day I started feeling ill. Feels like a viral infection, sore throat with cough, chills and generally aching all over and very bad fatigue. I decided to see my doctor yesterday but unfortunately she was off and the one I did see, just took a peep inside my mouth and swiftly dismissed me as she said I had no tonsillitis and told me to get my bloods checked? Got bloods done anyway, but as it was my first time taking prednisolone I'm not sure if this is the norm or is it just viral? I have been on them for one month starting at 20mg and tampering down 5mg every week.

[Mmrr]

I've been on steroids longer than you, 16 months now and have been trying to taper down, then need to increase again in a vicious cycle. Up and down all the time. I've been told not to go below 5 without medical input.

Based on the medical guidance I've had, dropping 5 mgs a week seems ok, but dropping from 5 to zero in one week seems a rather big step, I would have thought something like 1 mg a week after reaching 5mgs, particularly since you are not feeling so good. I think you need some medical advice and clarity.

It might be worth asking your GP again, being clear you don't feel well and 5 to zero seems a lot.

[Pinkypie2018 in reply to Mmrr]

I was very hesitant in starting them just in case I wouldn't get off them again. My surgery closes half day on a Wed so I think I'll ring in the morning and mention it. I do feel it's a viral infection but having steroid withdrawal isn't helping.

[Cal66 in reply to Pinkypie2018]

Hi

Ask if you could have 2.5 mg if having withdrawall then go to 1mg. I was on them for over 20 years & found that the best way for me.

[Pinkypie2018 in reply to Cal66]

Great idea if I don't feel better in a day or two I think I will ask about that.

[medway-lady]

I agree with Mmrr talk to GP as it seems a bit quick but I've been on 30 then down in 5 mcg steps then to 4 a week then 3 then 2 then 1. Got to 4 and put up again as RA meds did not work. Such is life ! xx Make sure your not dehydrated though as that seems to make a difference on Prednisolone too. x

[Hidden in reply to medway-lady]

medway-lady, I was down to 5mg for 2 years after reducing down from 40mg a day for 2 years. I'm now down to 4mg for 56 dqys then down to 3mg for 56 days, etc until finally 1mg a day for 56 days, then finish. I'm also on MTX and Leflunomide.

[Pinkypie2018 in reply to medway-lady]

Thanks for the tip but thankfully I already drink at least 2 litres a day. I'm glad I posted now as I have no experience of taking steroids but I did have a feeling the tampering down was quick.

[Hidden in reply to Pinkypie2018]

I think you can taper in bigger steps when you’ve only taken them a short while as you have. Being on them long term like I was needs tapering very very slowly. But do check with your GP or rheumy nurse to check what you have been told to do if you’re not sure 😊

[Pinkypie2018 in reply to Hidden]

Can I ask how did you know you needed them for longer? I think it's strange I started to feel ill once I got to 5mg and was wondering if I maybe needed a longer term on them.

[Hidden in reply to Pinkypie2018]

I was put on them when I was diagnosed and never taken off, I think that’s what they used to do but it’s less common nowadays as people do get problems being on them long term. When the prednisolone wasn’t controlling my RA they just added more drugs. I never questioned it until a few years ago and tried 3 times to come off them but always flared so would halt and stay on that dose until the next drug started working. Finally came off earlier this year 😁 It may be you’re not flaring and just caught a virus, I suppose you will know if you start to get inflammation. Let’s hope it’s just a virus.

[Pinkypie2018 in reply to Hidden]

Thanks for your help, it's just hard to know what is going on and finding out other people's experiences is a great help. I'm thinking it is a virus it's just bad timing as I'm coming off the steroids.

[Hidden in reply to Pinkypie2018]

Sometimes its hard to know if you are just being ‘normal’ ill or starting to flare. I hope you feel better soon

[Radiogirl]

My plan is to never, ever take it again. It was horrible. I felt I'll so I tried taking it bedtime, but that didn't help. Also, I have gained so much weight and because of my fatigue and joint pain I am having a horrible time losing weight and toning back up.

You're not alone in hating the steroids. When my rheumy prescribed I asked him a ton of questions regarding my fears and he just shrugged them off as if I was just been a worry-wart.

Good luck. Hope you can find another medicine road. xxxooo

[IslandLife53]

Hi! I do not desire to be a bearer of maybe not so good news for those of us with a history or currently using prednisone; but the reality of it is “damn if you do and damn if you don’t”. I have just been diagnosed with autoimmune deficiency diabetes because of the steroid prednisone, additionally my pancreas is in the process of atrophy. Not the best news. I am a very proactive patient. I read everything I can get my hands on and ask questions. I never knew of this dangerous situation. Reality check! I have always detested prednisone!!