Be aware the dreaded steroid!!

[Maudex]

Hi, I am on the last leg of withdrawal from prediselone (sorry about the spelling), does anyone suffer with stomach cramps as well as usual fatigue and aches and pains,. I suffer with PsA and currently take benepali, it would seem the worst is the steroids. I have suffered with cataracts (2 operations) and skin thinning, please be careful when taking steroids when you are over 60.

[AgedCrone]

Agree with you 100%.drugs from hell!

[KittyJ]

Yes and under 60 too 😔

[Lolabridge]

Sadly I have no choice 😢

[Mmrr]

They have helped me a lot, I would love to be off them, but life is important too., they are the only meds that given me any quality of life.

[sylvi]

I hate the B""""y steroids and I have got them down to 5mgs and on the 1st of the month I will reduce them again and I know I will suffer, but I want off them asap so I do it a month at a time. It has put loads of weight on me.xxxx

[Hessie5]

Prednisone saved me from debilitating hand pain that left me in tears, unable to sleep. It calmed my inflammation that is always constantly elevated.

However, it left me moody, irritable and tearful too. But I needed it at the time so was grateful.

[sunnyweek]

I've been grateful for prednisolone, had it on and off mostly on at a low dose for about 20 years, for lungs and eye also which RA gave me, at 30mg for a year and 60mg for eye for a week. Yes got thinning skin, and had 2 cataracts done but think they were more age related said doc. I was hyper at 30mg long term! but I've found it a very useful drug when needed.

Just weaned off it in May this year. Didnt have stomach cramps though.

Still take short term if I get a flare up as well.

Then had 100 mg last Monday as part of the retuximab infusion.

I'm over 60 now too.

Hope you finish your withdrawal soon and be well. x

[Mmrr in reply to sunnyweek]

I find oral prednisolone an amazingly good drug, I'm fortunate that it calms my inflammation without any nasty side effects. A recent DEXA scan showed my bones to be unaffected (so far).

I've had 4 failed DMARDs and 1 failed biologic and been quite ill at times. For 21 months prednisolone has given me at least some life.

All drugs need to be balanced against side effects and benefits, MTX for example caused me huge health problems that prednisolone has not.

[sunnyweek in reply to Mmrr]

Yes I agree, I'm very happy to take prednisolone when I need to. Its a good drug for me for calming inflammation. Glad though that after 20 years I have just come off it except for flare ups, but would be happy to take again if/when needed.

[DiHi in reply to sunnyweek]

I don’t like taking them, but, a big but, when I’m in serious flare, I find them a tremendous help-been on them 10mg for a couple of months , and have walked without a stick for a week! Really helpful was hydrotherapy! When my hands are really sore especially thumbs,I put them in warm water, and flex them! Wringing-out washing is also good.

[AgedCrone in reply to Mmrr]

Exactly......I lasted 7 years very successfully on Mtx...less than 7 days on Prednisolone !

[Troygirl]

Have been on prednisone since Dec 2018 with doses as high as 30mg which has caused me to develop Cushingoid! I do not even look like myself anymore!

Terrible drug yet is the ONLY drug that will allow me to be able to function and get to work each day.

I am trying desperately to reduce. Down to 12.5 I take it at 1:00 in the morning so when I wake up I can be somewhat mobile!

Tried so many RA drugs and currently on 4th month of IV Infusin Actmera and STILL needing the prednisone!

Have been in a terrible wrist & shoulder flare since Dec 2018!

[Nanna71]

Hi, I suffer from none of those things that have unfortunately caused you so much trouble. Although twice felt a bit of nausea in the last 3 months due to MTX increase. I am also tapering pred. and have finally been able to get below 20 mgs. (at 13 today).

For me, the pred. was the wonder drug that enabled me to do simple things like sit on a toilet and lay in a bed and step outside my door without unbelievable pain. side effects for me - thin skin, extra fat pad back of my neck and the inability to sleep, at all, at the beginning (I had to take 50 mgs to start).

I am 72 and happy to be going into remission (my right foot anyhow) as the Dmards kick in and I can taper off the pred.

Weirdly, the thin skin had one perk - the calloused on my feet thinned out.😊

[medway-lady]

Well over 60 but Prednisolone has not affected my hair just my weight, I had it for kidney failre at 60 then 30 then down in steps now at 2 mcg. not had any side effects except I actually feel better now down lower. I had no choice but to take them and agree drug from hell by mouth much better by injection. Now to get weight off...... xxx

[14penny]

Hi I was put on prednisolone 6 years ago when in hospital not being told what they were now I am struggling to get of these damn things iam down to two 2.5 a day and hope to get off them soon just not to sure how to do this any comments?

Thanks and good luck 14 penny

[KittyJ in reply to 14penny]

Very slow reduction is the key 14penny. I’d speak to your rheumy nurse or GP about any plan to do this, they can give you advice. Good luck. I’ve been there too and finally got off them earlier this year.

[14penny in reply to KittyJ]

Thank you Kitty, it has given me hope of getting off of them as have put 6ib on in weight round the middle and am now having to take Alendronic Acid which is horrible for the Osteoporosis which Prednisolone has given me but hopefully I will slowly come off the prednisolone maybe reducing one pill every 2 months or so. Good luck and thanks again for your reply. 14penny