Dear All

I have been on Prednisolone for about three months with the maximum dose being 15mgs. I saw my Rheumy in December and he said he did not think it was helping (my GP prescribed it) and instead he has increased my dose of Methotrexate to 25mgs along with the Leflumonide I also take. He has asked me to come off the Prednisolone slowly. I am now down to 2.5mgs every other day with a view to stopping it completely over the next couple of weeks.

Over the last six weeks I have not been feeling too bad. Still in pain each day but definitely better than I was 12 months ago and I have put this down to the increased Methotrexate. Today I woke up and I feel terrible. All my joints hurt and I feel very under the weather. The unknown question, of course, is, is it a flare (not had a bad one for about 6 months) or is it a side effect of coming off the Prednisolone? Has anyone else experienced this when coming off steriods?

Jackie
xx

I could be wrong here Jackie but I would have thought that coming down from 25mgs per day to 2.5mgs every other day since December was pushing it a lot. Definitely check wuith your GP.

Love Jeanxxx

Hi Jackie, I have been on 30 mg of prednisolone daily because it helps my Colitis, my maintenance dose for RA is 7.5mg. When I come down I use use this formula; 30, 27.5, 27.5, 25, 25, 22.5, 22.5etc, I have had to do it several times and touch wood I have had no bad reactions. I wonder if your increased metho has not had the desired effect yet. Hope you feel better soon.

All the best John.

Hi Jackie, i was on Prednisolone for 5 years 25mg at my highest dose and was on 5mg for the last year, it took a good year with me reducing them very slowly and if i felt really bad then even upping the dose for a few days . i always remember my old consultant saying i dont think you will ever be able to come off them ! but i said i was so determined i hate the way my face and skin had gone since taking them long term and the weight gain, dont get me wrong they did the job of making me be able to move when the RA and Lupus were really bad but after a couple of years the were not working miracles any more , the last couple of months i would bite a 2.5mg in half and them bite the half again so i would take a quarter every other night until i only took them a few night a week, the consultant thought i was a bit mad when i explained what i had done to reduce the steroids ( i didn't know until i read on the forum that you can get a lower dose tablet of prednisolone ) it would have been a lot easier Lol any way in April it will be 2 years i have been off oral steroids , my advice would be do it very slowly your body has to get use to making natural steroid again and the doctor told me this can take time

Good Luck , i hope you can succeed in getting off them

Sophie x

Hi Jackie,
I too think that you're coming off the pred too quickly which will induce a flare, I have been advised to come of by 1mg a month. My gp has given me 5mg and 1mg tabs to aid the process.

I first tried 10mg one day and 5mg the next, but this just gave way too a flare. I have done a lot better with 1mg per month reduction.

Mind you its taken me three months to get from 10mg to 7mg, hope you get there in the end,

Ellie x

Hi Jackie

I am on 10mg daily because of the RA collapsing the red blood cells (heamolytic anaemia), was told by the Haematologist that this is indefinate, have been on them for 10 years, the only time I came off them I was on 5 mg every other day and after a week my Hb dipped under 10 so was put back on them.

Albertxxxx

I'm in the same position. I'm on 17.5mg methotrexate which they don't believe is working. I'm also on prednisolone as I was in constant flare. They think I should have improved considerably by now and have reduced my dose of pred gradually to see whether it was just the steroids keeping me out of flare.

I was on 10mg pred a day and now I'm down to 5mg a day. This is to be achieved by doing the following:-

10mg every other day, 7.5mg alternate days for 2 weeks
7.5mg daily for 2 weeks
7.5mg every other day, 5mg alternate days
5mg daily for 2 weeks (where I am now)
5mg every other day, 2.5 mg alternate days
2.5mg for 2 weeks
2.5mg every other day for two weeks

I've noticed a gradual worsening of symptoms as the dose is reduced although things seem to settle after a day or so. Although I'm not as bad as I was before I still have some mild swelling and pain and now my knee is affected again.

I'd be intersted to keep up with anyone else's progress too.

Hi,

I keep getting small RA flares when I try to get past 5 mg, so kept going back to the start. My GP really annoyed me when I last went to visit her and does not understand how hard it is to get off the steriods though it may have been that I had the last appointment and she was tired. So for the past 2 weeks i have since starting taking three quarters of the 5mg tablet. As a result my shoulder is playing up at night since I started to reduce it. I am trying to percevere but this morning I was in agony thankfully a couple of parcemtol kicked in and allieviated it.

I wonder if this pain is RA or sign of permanent damage though I dont seem to have it during the day. or will ignoring sign cause damage as RA is active.

Any thoughts welcome.

Hi guys!

This is a really difficult one from my experience. I have been on prednisolone in varying amounts since diagnosis 22 years ago (along with any number of drug combos!!) and my regular daily dose is down to 3mg. I'm in a blip at the moment due to cessation of Enbrel for an op and been forced to take 15mg prednisolone to control flares. Hopefully once the Enbrel kicks in I will be able to return to the usual regime.

I have on countless occasions over the last ten years tried to get off prednisolone completely but it seems impossible long term. I'm okay for a few weeks then start to notice the missing steroid, pain, inflammation etc. It can sometimes be difficult to differentiate between withdrawal symptoms from the drug and a flare of the disease itself! Last year I had to have both lenses in my eyes replaced due to damage caused by long term steroid use. My consultant feels that it may not be possible for me to cut down below 3mg as the body's own mechanism (adrenal glands) for producing cortisol may have been impaired by the prednisolone. That aside it can take years to taper down to a very low level or none at all and it has to be done very slowly by 0.5 mg no more often than every few weeks. It's certainly a long term project ... good luck guys, I'm interested to know how you go on

Lyn x