i have been on steriods for about 8 ish years.
Have tried a few times giving them up , I am trying again
I normally take 5 mg a day and am reducing them by 1/2 a day for a month then another half for a month Ect
Has anyone else managed to get off them, after taking them for a long time
Hi
I also had been on steroids for about 8 years and about 5 months ago I came off them completely and was so pleased with myself that I had eventually done it and it’s the best thing I have ever done. The weight I had gained while I was on them just fell off me. Feel so much better for being off them.. 😊
I was on steroids for 12 years, they had to do it very slowly and it did take quite a while. Are you on anything else? It was once I was on biologics that I finally managed to come off them completely. Good luck 🙂
Everyone says it's so hard to get off steroids, but no one has really elaborated on what happens when you try. Do you get more pain or flares?
When i have tried before , I did get more flares and a lot more pain and that’s why I went back up to my 5 mg a day
So does your blood also show more inflammation? Is there a difference if you've been on the low dose from the beginning or you started going down from a high dose?
I feel for you Jillyanne because I'm in the same position so not an awful lot of help for you. I'm on a lower dose, 2mg prednisolone, previously 3mg deflazacort but swapped to pred in an effort to reduce the dose more precisely due to deflazacort tablets only being available in 6mg. I'm a little over five years in now & attempted tapering a couple of times only to flare badly & the dose increased back to 2mg. I'm assured by my Rheumy at my next appointment at the end of the year that we'll try a different, even longer tapering plan but do fear as I've exhausted the most popular DMARDs, remaining on MTX, that she's relying on pred rather than DMARDs to keep me pretty well controlled..It's not ideal as I have osteopenia/borderline osteoporosis & despite my previous two DEXA scans showing no further deterioration I really would prefer not to be kept on steroids as a longer term disease holder.
If you're trying to manage this on your own do please ask to be given a specific personalised taper plan, trying to reduce slowly it over a long period so you don't risk having any of the many possible side effects of being on them so long, or going headlong into a flare.
I'm in your corner, stick to your guns & do give it a good go, meanwhile being aware of the first signs of any problems & reporting them to whoever forms your taper plan.
Thank you , yes , had appointment with Rhuemy nurse and she told me how to reduce slowly .
I came off MTX , awful drug , I am lucky because I am now on Rituximab which works well
Have you tried alternate day dosing? Have understood that is often a better alternative, less side effects and easier to wean off.
Yes, that what the Nurse said, so for a month , one day 5 mg and the next 4 mg
The next month reduce again , so basically it’s reducing by 1/2 mg a day, sort off 🙄☺️☺️
The alternate day dosing regime means that you take a double dose one day and none the next and go on like this.You are describing the intermittent dosing regime, not the same. It's really strange that people do not do this since an abundance of scientific evidence for this being a better way to take steroids and goes more easy on the body.🤔
Here is one study. There are several later studies as well.
That's good, always best to follow a medical professional's advice who knows your history. I really hope this time it works & you manage to come off pred.
I suppose it's your experience of MTX that colours your feelings about it, how well you tolerate it & how well it works for you. It's served me well so feel quite different!
Have you ever been tested for your risk of Osteoporosis while on steroids? I have Vasculitis which requires very high dodes for long periods. I now have Osteoporosis. 
I have had a bone scan , they advised a tablets to help my bones but could not tolerate it , so have a liquid that I take twice a day from the chemist
My doc and rhum nurse both said I could not be on steroids longer than 3 months I was great on them now I am off them pain is back etc why could I not be on them 8 yrs 😞
One reason is the cost to your bones, they can reduce bone density & so increase your risk of fracture or breaks (osteoporosis). They can also suppress our immune system further, as well as other unwanted problems. Personally, I think they should be used as they were by my previous Consultants, short term (prescribing a month's course at a time until under better control) rather by my current Rheumy, as an aid to keeping me controlled. This explains in greater detail arthritisresearchuk.org/art...
Still do s not explain why some people are on them for years if their so bad for bones etc surely they are damaging themselves then ??? I don’t understand this
Quality of life , I saw my Dad who was riddled with RA and died 22 years ago.
Personally I would prefer to have a better quality of life and not live so long , just my opinion
Sorry, think we're at cross purposes Elswick. They are bad for bones & it's preferable, if not necessary, when you have RD that we retain our bone density. You see RD itself directly puts us at risk of fractures & bone loss, the bone loss directly caused by RD is most pronounced in the areas immediately surrounding the affected joints. If we're unfortunate enough to need joint replacement it stands to reason we take care of our bones, the better the bone surrounding the affected joint the better the outcome. We can help ourselves either through exercise, diet, or supplementing if needed. To add a tablet taken long term that increases the risk of bone loss even further isn't ideal if it can be at all avoided, by attaining better control with the meds used nowadays which don't put us at greater risk of reduced bone density is far more sensible don't you think? Also women are already at increased risk for osteoporosis, so special consideration should be made for them I think.
There are some people who don't respond well to RA drugs Elswick, and steroids are their only option. But they are made aware of the risks and usually given additional treaments to help counteract them. For my Osteoporosis I have Adcal + D3, and Zoledronic Acid (a Bisphonate) as an annual infusion. But these also have their risks. So we take drugs to treat the original illness, and more pills for the side effects of the first lot. I wouldn't wish Osteoporotic spinal fractures on anyone. The pain is horrendous. Far worse than RA.
Jillyanne,
I have been on steroids for (dear god) 10 years. For the past year, I have been slowly weaning from them. I was at 10mg a day, and I am down to 3mg a day (1mg morning, noon, and night). My next decrease will be to 2.5mg. I am holding off on the next decrease due to SUMMER! I want to be able to get around well.
I am on Enbrel and methotrexate--weekly doses. (I have been lowering the metho, too; I am down to 4ml.) It took almost a year for the new meds to work, and for their side effects to even out.
For the past several months, I start moving early in the morning (no more 2-to-4 hour starts), and my energy lasts fairly well until evening (no more frequent naps or zoning out). I could not be happier about how it is going! The fog-headed feeling nearly disappeared, too. Whew. (I just wish I could get my memory back.)
Good luck to you with your decreased doses. And do keep us informed on your progress. It's a slow process to bring down the dosage. (It took me about 18 months to get to 3mg.) We are all behind you! (So don't turn around..hahaha)
Now, what was I going to do next? (ah...there goes my memory again. arkarkark)
That’s brilliant, well done
It’s definitely going to be a long process but determined.
Took myself off MTX , don’t blame you getting off it
Woop, woop thought I would let you all now that I am down to 3 mg a day , so proud of myself.
Have to say it’s not been easy , as soon as I lower I have a flare but persevered ☺️☺️, I will stay on 3 g for a month now
This is the lowest I have ever been , so chuffed
Have any of you tried swiching to hydrocortisone?
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