Struggling to get off Prednisolone - anyone else struggling?

Hi,

I was diagnosed with UCTD (Undifferentiated Connective Tissue Disease) in 2012. I am currently on MTX and HCQ + Pred.

A couple of us are struggling to get off Pred. I get to 5mg and then flare. My Rheumatology Consultant is keen (as I am) to get to 0 but I am beginning to wonder if this is just an impossible target.

Is anyone else in the same boat?

Joy

26 Replies

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  • How long have you been on pred. What dose did you start with and how long were you on dose exeeding 15mg?

  • Hi Simba1992

    I have been on Pred since I first presented at Clinic in 2012. I arrived in a wheelchair as I had seized up so was given a jab. This worked it's magic after 48 hrs.

    Then began the game of finding out what I had as I was coming up negative for all the standard RA markers. So I was put on 10mg Pred. once the jab wore off.

    I have rarely exceeded 10mg. I've had a couple of flares since 2012 and on each occasion I've had to take 20 mg for a couple of weeks before quickly coming back down to 10mg.

    Most of the time I am hovering around the 7.5 to 5mg range. And when I come close to the magic 5mg things go wrong.

    Have you been on Pred a long time? Are you in the same boat? Is there something magic about 15mg? I was told the first magic no is 7.5mg and the second is to get just below 5mg.

    Joy

  • I have not been on pred for long periods. Have in fact tried to keep away from it after having done my research on it. I can understand however that in your situation it would be a hard decision to make. The good thing is that your dosis have not been very high. Longterm use of pred can result in a permanent dysfunction of your own cortisol production and if that is the case it is almost impossible to be without pred. I hope it is not the case with you. Good luck.

  • Glad to hear you have not been reliant on Pred for long periods.

    I don't take Pred out of choice. Without it I would be flat on my back 24/7.

    I too have done a lot of research - I am a food scientist. My Consultant has told me a lot as he knows I will go research it anyway.

    Yep every time I hit the magic 5mg I am supposed to have a short synacthen test but have never manage it as things go belly up (flare). The cortisol dysfunction is the least of my worries. Osteoporosis, heart attacks and diabetes are more of concern from long term reliance on Pred.

    I am really keen to hear from people who are in a similar boat to me and Misty. We are both heavily reliant on Pred despite taking other meds.

  • I also manage to get down to the magic 5mg, but this low level affects my breathing as well as my RA. I also have bronchiecstasis and difficult asthma. I saw my lung consultant last week and he suggested upping my pred to 7.5mg and this has made an improvement to both my breathing and RA. He has referred me to endocrinologist to have the synacthen test. He also said that the there wasn't much difference in the affect steroids have on your body between 0 and 10mg.

  • Thanks for your reply Helen.

    There certainly seems to be a pattern developing here with those of us that are stuck on Pred.

    May I ask how long you have been on Pred for?

    As usual we are getting conflicting advice on 'safer' cut off doses of Pred. I read an article recently that said if you can get just below 5mg then you reduce your risk of diabetes by 30 to 40%. Getting below 5mg has been my goal but I think I need to wake up and smell the roses.

  • I've been on pred for about 10 years, various daily doses and several short periods of up to 60 mg with chest infections. 5mg is the lowest I've ever been. Ive always reduced the dose very gradually. I'm now on 7.5 and feel the best I have done since before Christmas.

  • Thanks for your reply Helen.

    I am glad to hear you are doing well on 7.5mg.

    Joy x

  • Hi Joy. I have been on pred. for 31 nearly 32 years now. I would love to come off them, as they are the main cause of my osteoporosis and possibly my Glaucoma. I have a review next week with the rheumy nurse re the osteoporosis, so we shall see. I'm not sure I can do without them, only on 5mg for a few years now. Wishing you all the best. X.

  • Many thanks for your reply Gigi71.

    Its good to know Misty and I are not the only ones stuck in the Pred. Club. I am sorry to here you have osteoporosis and Glaucoma as well.

    When you knew you would have to potentially take Pred long term did you get any advice as to how to minimize the effects of Pred? For example were you told to increase your calcium intake or increase your weight bearing exercise? Keep your sugars down to reduce the risk of Diabetes?

    Joy

  • Was prescribed calcium/Vit D powder to make into a drink in the beginning, which was disgusting, was a bit lax with that. When I did get osteoporosis was given leaflets and went on Fosimax and calceos, also had a 3 year course of prolia, Strontium tabs didn't agree with me. And now Alendronic Acid. Have had glucose tests done, never really been overweight and my sugar and carb intake is low. So Diabetes has not really been mentioned to me. Have high bp started about 11 years ago so poss meds related. X

  • Good to hear you have managed to keep your weight down and that you are sticking to a low sugar + carb regime.

    I guess if it comes to the point when they say that I may need to accept being stuck on Pred that I look at all the risk factors and try to minimize them as best I can.

  • I haven't managed to get below 5mg myself. I did the year before last get down to nothing - tremendous struggle doing the last six months coming down from 5mg - but after only a few days feeling triumphant, I had a flare and was soon up again to 5mg. Then I had to have more for a bit and got down again to 5mg - tried 4.5mg for a month, OK, 4mg for a month Okish, 3.5mg - oh here we go again in bed for the week, joints flaring...I surrender, back on 5mg.

    The consultant isn't worried about 5mg, thinks I should stay on it. So I've given up trying. And today the doctor has just put me on 30mg for a week...so no chance.

  • Thanks for your reply oldtimer. Sorry to hear you have been put up to 30mg.

    You kindly replied to my post a couple of weeks ago about flares. I was having a bad flare in my feet + right hand. Yep I had got to 5mg once again and was beginning to think yippee. I was getting ready to book my short synacthen test and then bang I flared. I was put on 15mg but that was not enough so went to 20mg and 2 weeks on flare has subsided and I have started a fast drop back to 10mg - then its back to Clinic once again.

    May I ask you how long you have been reliant on Pred? And what about side effects?

    thanks

    Joy

  • I've been on prednisolone for 10 years now after it was discovered that the RD had affected my bone marrow - high dose steroids sorted that out and I gradually tailed down to 5mg.

    I've been fortunate that my bone density is excellent and I haven't developed diabetes. I have even managed to lose 10kg in the last couple of years since I've been mostly on 5mg. So life without too much in the way of side effects is possible!

  • Now that's some positive news! Thank you for sharing.

    10kg - wow! I read some time ago that for every pound of weight you drop you take 4 or 5 lbs pressure off your feet and knees.

  • Hi there

    I have been on pred for Psoriatic Arthritis for the last 14 years and probably on a lower dose ie 5mg for the last 5 years, I also have been told they want me to come down to 0, i lowered it to 2.5mg and have had a really rough time. All the areas that were masked from swelling, pain etc have now resurfaced. Im hanging in there because i will be starting ANTI tnf treatment soon. The reduction has been since October and as time has gone on more has surfaced. If i wasn't starting new treatment i would also wonder if it is possible to come down as i'm struggling a lot. I'm also on Hydrochloroquine and MTX. Not helpful to you but just thought i'd give you my experience so far!

    Good Luck

  • Gosh no Wizard that is very helpful indeed.

    It's interesting to note that rather than being told to just stay on 5mg Pred that the aim is to get to zero and with that in mind they want to start you on Anti tnf treatment.

    I am just wondering if ultimately they will say to me 1 - stay around 5mg or b - lets introduce another drug and see if that gets you to 0 Pred.

    Hang on in there. Many of us know how you feel. I have just got over a flare in my feet + right hand. Got to 5mg Pred once again and flared up. 20mg Pred did the trick and I am fast tracking back to 10mg before I then go back to Clinic.

    Joy

  • One of the main concerns is that my bone density scan is borderline osteoporosis. So really that's the driving factor. I don't understand though how we ever really get off it unless we just deal with being a heap constantly. Here's hoping the anti tnf works miracles!

  • Yes you are right. That was in my mind when I originally posted my query. Folk talk about "well I was on Pred short term ....." but I could not see anything around the subject of being stuck on Pred. Some of us as you say would basically be a heap on the floor without Pred - I am certainly one of them!

    Okay so another picture seems to emerging.

    1 - we seem to function on around 7.5 to 5mg Pred

    2 - when the long term side effects of taking Pred kick in then it's time to aim for 0 Pred and add another drug to allow us to get off Pred.

    May be I am being over simplistic as we all different but it helps me get my head around the subject.

    I very much hope you get to 0 Pred asap and that this then halts the osteo in its tracks.

    Joy

  • Thank you. You too!

  • It took me a long time to take myself off steroids I had to do it half a mg at a time and made sure I did it very slowly. It did not work for me reducing my steroid quickly so. Good luck with everything.

  • Thanks for your reply Kalel.

    I reduce by 0.5mgs every 4 weeks. Any faster and I am in big trouble when it comes to fatigue. But I just can't cross the 5mg threshold.

  • well if doing that works for you great. I don't remember what I did but I have a feeling I reduced the dose by half an mg every 4 months. I was only on a very low amount of steroids about 3mg but every time I tried to come off I either started getting a flare or didn't feel good.. Just figure out what works for you and your body as long as you get off it prob doesn't matter if it takes you a while longer than what you originally expected.

    I was once told that our bodys get some what kind of addicated to the meds and this is why it can take some of us longer to reduce the meds we are on. Hope things work out for you.

  • Thanks kalel

    My Consultant did tell me that once I had dropped below the 5mg threshold that the reduction would be a lot slower. So I guess that's where it ties in with you.

  • At my instigation my consultant agreed to 'up' my Mtx to 20mg in order to start the downward trend from Prednisolone 5mg by 1mg per month. I'm now on 3mg until 29 Jan but I can't say I'm particularly comfortable.

    My weight 'ballooned' after diagnosis last April when I was prescribed Pred 3 x 5mg for 5 days; 2 x 5mg for next 5 days; 5mg for next 5 days and then STOP. My younger daughter reckoned it was too soon, and so did her rheumy nurse in the next county. Within 2 days she spotted I was starting to flare, rang my GP practice for permission to 'up' the Pred again and the doctor she spoke to was happy to oblige as she was evidently more knowledgeable on the subject than he! The new prescription was for gastro-resistant 2.5mg tabs x 6, reducing by 1 tab per week until I was down to 5mg, at which level I remained from mid-June to end-Sept as it took several weeks to get consultant consent to my request, and I got the impression he was a bit reluctant. I now have 1mg tabs to enable further gradual reduction but I'll be hanging onto my 5mg 'spares' as a safety net, if required.

    To accompany the RhA I've since been diagnosed with Osteopenia (not so serious as Osteoporosis) but bone density medication has now been added to the mix - all the more reason why I want off the Pred!

    My big toes are starting to curl up like Aladdin's slippers so I reckon I'll be fit for pantomime by next Christmas!

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