Help Coming off of Prednisone

I have been on Arava for almost 2 months - doing very well. I am to try to come off of my 5mg prednisone. Last week I started taking it every other day and it seemed ok. However, last night (Sun) I woke up with terrible pain - in some joints but mostly in my teeth. It felt like all of my teeth were throbbing all at once. It was terrible. I tried alieve but did not help. I resorted to my Pred pill and that calmed it down. How am I going to come off of this drug. Any ideas and success stories would be greatly appreciated.

Mayna

15 Replies

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  • Hi

    Firstly I would suggest giving your nurse specialist a call to see what she might advise.

    The NICE clinical knowledge summaries for the management of steroid use suggest the following:

    •As a general principle:

    ◦ Short courses of oral corticosteroids (less than 3 weeks) can be stopped abruptly.

    ◦ Gradual withdrawal should be considered for people whose disease is unlikely to relapse and who have:

    ◾Received more than 3 weeks of corticosteroid treatment.

    ◾Recently received repeated courses of corticosteroids (especially if they have been taken for longer than 3 weeks), for example prescribed for the treatment of acute exacerbations of asthma.

    ◾A history of previous long-term therapy (months or years).

    ◾Other possible causes of adrenal suppression, such as excessive alcohol consumption or stress (for example due to infection, trauma, or surgery).

    ◾Received more than 40 mg prednisolone daily or equivalent for more than 1 week.

    ◾Been taking repeated evening doses of corticosteroids, which increases the risks of developing adrenal insufficiency.

    •If stress, for example caused by infection, trauma, or surgery occurs up to 1 week after stopping the corticosteroid, additional corticosteroid cover should be prescribed to compensate for any potential adrenal suppression.

    •During withdrawal, the dose of oral corticosteroids may be reduced rapidly down to physiological doses (about 7.5 mg of prednisolone or equivalent) and reduced more slowly thereafter. For a suggested withdrawal regime of oral prednisolone, see Table 1.

    Table 1 . Suggested method of withdrawing prednisolone.

    Suggested change in daily dose

    Circumstance: The problem has resolved and treatment has been given for only a few weeks.

    Reduce by 2.5 mg every 3–4 days, down to 7.5 mg per day, then reduce more slowly, for example by 2.5 mg every week, fortnight, or month.

    Circumstance: There is uncertainty about disease resolution and/or therapy has been given for many weeks.

    Reduce by 2.5 mg every fortnight or month down to 7.5 mg per day, then reduce by 1 mg every month.

    Circumstance: Symptoms of the disease are likely to recur on withdrawal (for example polymyalgia rheumatica [PMR]).

    Reduce by 1 mg every month. Alternatively, the withdrawal regimen may be more complex, for example in the treatment of PMR – see the CKS topic on Polymyalgia rheumatica for more information.

    Data from: [Aronson, 2006a]

    I hope you are soon able to get things sorted.

    Best wishes

    Lorraine

  • Could your rheumy/gp prescribed some 1mg pred so you can come down slower. It may be that the Arava is not quite ready to take control yet as it can take 12 weeks. A chat with your rheumy nurse may be in order. Farm

  • I'm afraid I don't have an answer for you, no success story. I've tried tapering but I can't get below 3mg deflazacort & as such been on that dose coming up to 3 years. I've tapered slowly but I flare, otherwise I'm considered well controlled but of course steroids don't have any effect on the disease & it's not the answer. My latest DEXA score was difficult to determine whether it's had a long-term effect (I am borderline for osteoporosis) but despite raising the question nobody will take control without my Rheumy's say so. I've not seen her since this time last year, but a locum Rheumy, two Rheumy nurses & Registrar agree it's not ideal shall we say!

    Have you been able to ask to your Rheumy team if they have any suggestions of how to safely taper? Has your Rheumy decided that now is the time to taper, the LEF may not be up to speed just yet & the reason you're doing well is because of the support of the pred. Apols for the questions! When I've tapered I've never missed a day, that said if you've been given a plan your Rheumy needs to know it's not working for you, potential flares & adrenal crisis are best avoided!

  • Here is my story. I came off them last October after i had surgery and the hospital didn't give them to me,so i went cold turkey. I didn't notice the pain so much as i was i pain from the surgery. I have now been off them since then. I have to say my hands are not very clever at the moment,but i am off the steroids. Now this is not reccomended,so i suggest you cut them in half and take them like that each day.xxxx

  • I have had my steroids cut to 10 mg in the morning. Next week I go downn to 10 mg one day and 5 mg the next. I hope that it works, I can't take NSAIDs and I am hoping that the MTX has my RA in check.

  • I take Arava and nothing else, but the pain I had 2 months in was awful best described as agony. It cost me £35 plus X-ray at the dentist to tell me nothing wrong 2 visits to the GP= nothing wrong seems to be joint related try paracetamol, and 1 visit to the Osteopath and advice from the NRAS who suggested "Tenu" something or other. It was a side effect of the Arava which causes tendon pain and we have tendons in the jaw. It lasted about a fortnight with hot packs and ice packs used daily. But it passed and the Arava really kicked in and works well. No more tiredness or sore hands etc.

    So it might be nothing at all and will pass. I don't know about any other medications as only took MTX for a while as my hair fell out in a most alarming way and I take Riveroxaban which limits my options. The hospital changed it to Arava and no hair loss and I feel tons better.

    I hope you sort out the issues very quickly and are feeling better very soon and as we all know its best to ask the doctors who are the experts.

  • Hi

    What worked for me was the following tapering system

    take your recommended daily dose ie 5mg on one day then 4mg the next day then 5mg and keep alternating that dose for a month. The next month start with 4mg on the first day then 3mg the next and keep alternating for another month then 2mg/1mg etc.

  • I successfully reduced by 0.5mg each month from 5mg without too many problems of rebound joint pains etc. Took a long time!

    But unfortunately since coming off, I have been advised to restart at 5mg as I had promptly had a flare!

  • I have found the previous posts very interesting. For the last 2years on the instructions of the Rheumatology Consultant I have been taking 6x5mg "Prednisolone" daily.

    During the Christmas period with all the excitement and family I forgot to take the

    medication, on the 3rd day the pain was bad, once restarted the pain in my muscles

    went. I was taken into hospital a while ago following a fall, after blood tests were taken I was told of high blood sugar levels and diabetes was discussed, this has never been a problem but research on steroids indicate they will cause an increase in blood sugar levels. I am dreading coming off the steroids, my next appointment with the Consultant is in 3 weeks time. Any thoughts or comments will be appreciated.

  • Am I right in saying you are on 30mg of Prednisalone a day and have been for two years Scorpius ?

    If so, I'm not surprised in the slightest that your glucose levels might be high.

    Mx

  • My hubby has been on Prednsilone for over 2 years now he's down to 2.5mg daily used to surpress inflammation as he cant take NSAIDs he's also on Methotrexate to control RA. when he tried to reduce and stop from 5mg daily last year he was advised to take every other day as you have been but it really didn't work for him. It was too up and down on his system. As suggested by Taji you may need to take lower dose 4mg one day then 5 mg next for a week before reducing further a bit more gradual and gentle on system. Whatever you Really need to get speedy advice from Rheumy nurse or GP as obviously I'm not medically trained it's more to share experiences wishing you luck and a pain free withdrawal.

  • Hi

    I have been on and off steroids for two years now. I find that the main problem is feeling really down as I am reducing the dose. I am in a cycle of regular flares so go up and down with steroids a lot. I find reducing the dose by 1 mg a week works best for me. I also found that lodatra modified release steroids had far fewer side effects, and seemed to work better at lower doses than other types. You take lodatra at 10 pm and its meant to work with the release of cytokines that happens about 3am. It could be worth talking to go or rheumatologist about changing brand.

    Whilst the steroids work for pain I find it really hard to deal with the constant sweats and disturbed sleep.

  • hello, what I did was come off very slowly, so your body doesn't miss it as a big shock to your system. I decreased the dose a little each week over a period of about four weeks. I am still saddened that doctors do not tell their patients about how much havoc it can cause for some to come off prednisone or any of this class of drugs. You pharmacist/chemist will also have helpful information. Some people are more sensitive to medication changes than others, so for some it takes longer to come off.

  • Hi

    I have now been off prednisolone for 4 days yippee :) I have got Adult onset Stills disease and started taking it 9 months ago alongside meto-ject. I had the same experience as you every time I got down to 10mg my symptoms would flare so had to increase again, this happened a couple of times. Since then I have come off the meto-ject (because of severe side effects) and am now on Azathioprine. With this new drug (for me) I was able to come down to 10mg and then 5mg and am now off it. Hopefully for good!! It may be that you are trying to do it to soon maybe. I went down to 15 for a month then 10 for a month and then 5 for a month but everyone is different and thankfully the Azathioprine works for me, fingers crossed. Give the other drug a little longer to start to work properly for you. When it comes down to it your consultant will know best and it may mean you are on them a little longer than you hoped for. I was hoping to be on the steroids for less time because of weight gain and other side effects but it turned out that I just had to be a bit more patient (not a strong point of mine) it will happen for you just relax and go with it......good luck and all the best for the future xx

  • Hi Mayna. Lorraine the NRAS administrator is perfectly correct. I've been on Prednisolone for 5 1/2 years and from last year have been reducing down from my original 20 mgs. When I got down to 5 mgs it just a question of reducing down really slowly to allow your body to adjust. I've been constantly monitored by my rheumatologist and I'm down to 2 mgs at the moment. After my rheumy appointment yesterday I was told to reduce down from my current 2 mgs for 6 days per week and one on Sunday's and reduce down over next 3 months in a similar fashion. It's never good to stop taking long term medication swiftly. In the beginning the body would have taken time to tolerate it in the first place. So be kind to your self. I am expecting to be fully off my preds in 3 months. Good Luck xx

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