Can anyone share experience of coming off pred?

I've been on it for a couple of months, 10mg a day. When I started enbrel, I began tapering after the second week and got down to five in almost daily drops. For the last 4 days my symptoms have returned painful, stiff joints plus puffy feet and ankles.

I'm not getting support from the hospital, I'm checking with GP today. But it would help to know of others experiences.

12 Replies

  • Morning cathie. I don't take prednisolone, I was prescribed deflazacort which seems to be the preferred steroid in Spain due to less side effects on the stomach & bones. I started at 6mg in 2008 tapering off in March the following year, back to 3mg in July, upped to 6mg in March 2010 which was tapered again in December & back to 3mg in September 2011. Bear in mind I saw my consultant every 3 months & as such they were able to keep a closer eye on me than they can here. I remained on them until was tapered off them again in January this year but by April was I'd had enough of being in a mess, as you are experiencing at the moment, so my GP reinstated them at 3mg. I have an appointment with my Rheumy in July so will see what happens then. My guess is I'll have to come off them again but I obviously need some kind of alternative.

    Sorry it's a long winded reply but you did ask for others experiences!! I've no answers I'm afraid until my next appointment as I don't have experience of alternatives so looks like we'll be finding out together. Let us know how you get on at the doctors & what his suggestions are. I for one would be interested.

  • You're not longwinded, thank you!. I thought sharing experiences was a better way of approaching this than asking for advice which we shouldn't do (quite rightly). I think the single thing that would make things easier is to see the rheumy more often but that isn't to be and there are no specialist nurses at the moment either to look after me. I think they bung you on pred + a biologic and expect the GP to cope, when often they dont know about the specialist biologics and so can't really advise on tapering.

    Are you getting any medication other than the deflazacort?

  • Totally with you regarding seeing Rheumy's more often. I was far better controlled with 3 monthly appointments as shown in my reply. Here with 6 monthly ones I was sent away last time having been told by an SpR that I was in medically induced remission & to be fair I was under control at the appointment but told to taper off delfazacort & take my etoricoxib only on a prn basis leaving me with just the MTX, folic acid & co-codamol at the time. Not only do I only now only have 6 monthly reviews, I don't even see my named Rheumy each 6 time which I have issue with. I understand fully why I was told to come off the deflazacort & etoricoxib (to preserve my bone density & reduce possible heart complications) but as neither are a proven issue with me at present feel it would have been a better plan to explore other avenues which I intend to raise at my appointment in July. I was told to see my GP if I had any problems, who as I said put me back on them & his parting shot was that my Rheumy would probably not be happy him doing so but in his considered opinion I wasn't under control without them. I'm convinced if I'd seen my Rheumy earlier my downhill spiral wouldn't have happened. It's so unfair putting extra pressure on GPs who don't have specialist knowledge. I do have access to a Rheumy nurse but was found her somewhat dismissive the one time I saw her so have avoided contact since. So all in all, I'm somewhat dissatisfied with how things work here & as you rightly say it would be better all round for our continued welfare if we were seen more regularly as I can attest to.

    My meds are MTXinj 15mg weekly, folic acid 5mg daily (except day of MTX), deflazacort 3mg daily, etoricoxib 90mg prn, co-codamol 30/500mg x 2 4 times daily (+ at times, not comfortable with that as no longer effective), omeprazole 20mg daily, alendronic acid 70mg weekly & Adcal-D4 1500mg daily, the last two prescribed by my GP after my Rheumy advised my GP that "we should technically be prescribing" them for me. That was last July & it was eventually only prescribed by my GP when he reinstated my deflazacort, a total of 9 months! I did mention it at my last appointment in January but he didn't prescribe them so can only assume he considered it a good idea to override the Consultant Rheumatogist's opinion! Do you get the idea that I'm not impressed with the Spr I saw lol!

    Hope this helps but I bet you'll think twice before asking for experiences again with another rambling reply from me or at least hope I don't answer next time you do!! :)

  • I get immense help from exchanging experiences so I really dont want you to stop. You do seem to be taking a lot of meds and I'm sure that's the problem with me - ie. taking one to cancel out the bad effects of the other. They said I was in remission in January - now we know it was medically induced and I'm hopefully on the way up but who knows!

  • Think you've hit the nail on the head there with meds cancelling out one another. I may approach her with that idea & ask if she thinks I need a complete review to find me alternatives as MTX & co-codamol alone patently don't work for me & the medically induced remission is no more, so thank you for that. It hadn't occurred to me, although it should have as my husband's seeing a nurse specialist at the moment to sort out his neurological problems & has continual access to her with his struggles to find the right regime for him, although I've little doubt my Rheumy should be the one to do this. The trouble with me is my bloods (particularly my ESR & CRP levels) are generally good but my body tells me different & I've never been a wuss with pain or suffered fatigue, as I do now, before RD. I'd no problem, even taking into account the language difference, with my consultants in Spain. It helps that the DAS includes feet (a particularly problematic area for me) & I had a good professional rapport with each but only having seen my named Rheumy once, at my first appointment & hopefully see her at my next, I haven't had the opportunity to build the same with her & felt I was just yet another patient, which of course I am but she only has my word for how I am & no at the time of my initial appointment no documented history only what I remembered to tell her. Learning from this I gathered all my paperwork from first appointment to the last for my last appointment (stupidly assuming it would her I saw) but the only comment from the SpR was "they do far more thorough blood tests than we do" & he dismissed all results & regimes (ie on steroids, off steroids as my body dictated)!!

    The more I write the more I think I'm not a happy bunny with the whole situation & even fleetingly considered returning every 3 months to Spain to continue my treatment there, which really isn't feasible! :(

  • The Spanish system does sound good. I was sleeping in front of my computer and glasses fell off the top of my head. I think what you said about getting a review - as long as they dont take you off anything that is working. I hope you get somewhere!

  • Thanks, you too.

  • Hi, i have taken prednisolone for the last 4 years at various dosages. Each time i get to 7.5/5 symptoms start to show. I am on leflunomide& Humira injections as well. I have accepted i need the steroid to live as well as possible. Hope you get all the help you need. Love Alison xx

  • XXXX

  • Thanks. They dole these things out like sweeties and then we find the drawbacks

  • Paddy went to the pharmacist as GP hasn't replied to this morning's message yet. They said that most people can go down until they reached the 'physiological dose' which they said was about 7.5. I'd got down to 5, so I'm advised to go up a little for a week or so. Obviously the best thing is to talk to the GP when doing this. This BMJ thing might clarify a little - towards the end of the article.

  • pred never lasts for me. I feel great while I'm on it, and almost as soon as I go off the pains start returning, though it takes a good few weeks before it gets really bad again. I see pred as a bit of a pain holiday, not a cure. Just wish someone would offer me something that really did control spondy inflammation as I can't take the first line treatment of NSAIDs any more.

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