Coming off steroids

Hi I'm new to the Forum. After 3 years on steroids for PMR I finally came off them 6 weeks ago. I felt fine at first but my body seems in some sort of meltdown with all my joints from neck to feet in pain. I haven't much muscle pain though and am wondering if it's a reaction to ending the steroids or if arthritis has been setting in.

I'd appreciate knowing how other people have responded to coming off steroids? Thanks.

22 Replies

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  • Hi I'm new on steroids long term use terrifies me ! As does weaning off . Do we have a choice ?, I'm terrified . I hope you get a good response to coming off steroids I wish you well ( very new on here )

  • If by "do we have a choice" you mean is there an option besides pred the short answer is no - other than sticking it out with no pred and that is also associated with risks as well as the pain and immobility since the uncontrolled inflammation in the body leaves you at a higher risk of vascular disease and even cancer in the longer term.

    I have been on pred for 7 years - after 5 years of PMR without anything. I haven't crumbled and nothing would induce me to go back. Pred gave me my life back.

  • I hated being on steroids and tried to come off quickly and all the symptoms came back so I had to do it all over again which has took me nearly 4 years in total. So my advice is to do it slowly and it can be done!

  • Hi RitaAnne,

    Congratulations on your steroid taper. Your doctor will know best, but I suspect your body is adjusting. Your adrenal glands are kicking back in and producing natural hormones that the steroids had provided for so long. It's not surprising that things may hurt for a while. If you remain too painful you may need to go back on prednisone temporarily. But do consult with your physician.

    I've been on Prednisone for 13 months for Polymyalgia Rheumatica. I'm down from 30 mg to 8 mg which I started a few days ago. I've been feeling light headed with headache, nauseous and more fatigued than usual. Did you have these symptoms while tapering? My physician also has me on 20 mg of methotrexate once weekly to help come off the prednisone. It seems whenever we come off these powerful drugs there's an adjustment period. I'm also coming off Lyrica now since it didn't do much for my fibromyalgia. One of these days I just may go on strike with all these meds.

    Anyway, best wishes to you. I'd love to get off this prednisone and look like myself again 😊. Keep up the good work!

  • Thanks for replying. My doctor didn't give me anything to help so it sounds like yours is quite switched on. One of the side effects of pred for me was insomnia and I discovered that a lot of my fatigue was the build up of exhaustion. My doctor put me on sedatives which I took every few days and that helped enormously. Generally I seemed to be OK tapering down and for about 2 weeks after finishing but I am quite worried about the level of inflammation that's now appeared. Hopefully it's just my body going 'cold turkey'!

    Rita

  • Hi RitaAnn, I have been off steroids now for longer than I was on them, ie 2 for 1. Joint pain/stiffness still evident sadly but bearable with daily painkiller prescribed by GP. I regard this as the price I pay for saving one eye after GCA took the other. Could also be old age of course as I approach 80? Anyway, hope you fare better and sorry to be the bringer of bad news, but at least you won't build up too many false hopes!

  • Thanks for replying. I suspect the steroids have been masking some arthritis but I am hoping some of it is a reaction to coming off them. It's helpful to know what has happened to others.

    Rita

  • This is something to discuss with your doctor. Being off pred altogether is little different from being on a very low dose - except that you wouldn't be the first person to have a flare soon after stopping even that low dose. The people who have had PMR twice all say that the first and second episodes have been different and one lady says neither she nor her rheumatologist recognised the return. However the rheumatologist did all the investigations to rule out the alternatives with no positive results - and finally 10mg of pred did the job: conclusion was that it is PMR.

    Just because you are off pred doesn't mean though that you are back to normal - that can take up to a year or so so you do need to continue looking after yourself as you did with PMR and being on pred.

  • Thanks for replying. This is my second time round, I got to 2.5 and it came back so I am delighted to have got off them altogether. This doesn't feel like a flare up it feels like my whole body has gone into meltdown- I am hoping it is reaction to coming off them although I do recognise the steroids have masked some arthritis as well. It's helpful hearing from others.

    Rita

  • Hi RitaAnn, good for you for making it through the PMR journey.

    But just like a marathon runner at the end of the race, must stop and let his body and mind rest and rehabilitate, you need to give your mind and body time to adjust to your new normal.

    Being off pred allows the other aches and pains of normal aging to return, darn it anyway!! Arthritis doesn't forget us while we are attending to PMR, it just sits quietly in the corner, awaiting its chance to return to center stage!

    There are several over the counter anti inflammatory tablets which might give you a bit of relief in that regard. Don't be afraid to use them according to the label directions. Also the cox2 inhibitors are amazingly effective with arthritis, but require Doctor prescribe and monitor.

    Kind regards , Jerri

  • Thanks Jerri. I felt so good when I finished taking them it was a shock to have all this pain appear! I know some of it is arthritis but I feel very reassured by the comments about the body readjusting as I think that's what's going on. I am taking a couple of paracetamol at night and have fingers crossed it will settle.

    Rita

  • Hi I seem to be at exactly the same stage as you,came off pred 8weeks ago After 3 years. I was lucky throughout and able to continue with all my exercise activities. I was extremely careful with reductions especially during final few months. Pleasing and also a scary time! Fine first 2 weeks then stiffness on getting up in morning and difficulty reaching my toes.It does wear off during the day but still worry that pmr could gradually be returning. Members on this forum have advised that it takes 12 months for muscles to return to normal. I also tell myself it might just be age related degeneration. Am trusting that I will know the difference if pmr returns and not rush for the pred packet too soon. Would be great to hear from other members of their experiences when in remission/burn out

  • There are very few people on the forums who are in remission - many people do not like to be reminded of an unpleasant period of their lives and leave once they do not look for support. The other two UK PMR/GCA forums have sections where members have put their "off pred" stories.

    On this forum Celtic and Sambucca as well as Kate Gilbert are in remission, the first two from GCA, Kate from PMR I think. I'm sure there are others - can't think of any here though.

  • Thanks it helpful to know one can get remission as when newly diagnosed I was in a tizz

  • I wish I'd found this Forum earlier, it does help knowing what others go through. There is light at the end of the tunnel but do make sure you look after yourself on the journey to get there. I spent a lot of time exhausted because of insomnia caused by the steroids and when I talked properly to my doctor and got sedatives to help it made a huge difference.

    Good luck!

  • Hi and thanks for all your prompt responses and advice. I did not realise there are other forums. How are these accessed a how different are they?

  • Each has a character of its own. The patient.info one is part of a site that was originally set up by a couple of doctors in the north of England to provide info for other healthcare workers. It also has patient information sheets and nowadays has a lot of other functions within the NHS I think. There are dozens, probably hundreds, of forums for various subjects and was the original PMR/GCA forum. The northeast of England one is quite different and very relaxed. It appears to be quite new - the first version had problems and we had to move to a new host a few months ago.

    patient.info/forums/discuss...

    pmrandgca.myfunforum.org/in...

  • Thank-you that is really helpful. I felt great for about 2 weeks after stopping pred and it was a shock when all the joint aches set in. I've also kept exercising but knowing that it can take time for the body to readjust helps. I realise the pred has masked some arthritis in my joints and I am hoping it will all settle down. My only comfort is I seem to have joint rather than muscle pain so am hopeful it isn't PMR!

    Rita

  • After 7 years on pred PMR and GCA on instructions from Rheumy I stopped the last 1mg in January. I felt very ill, shaky and anxious and after a week went back to 1mg. I am now doing the slow method 1 day no pred and 1mg rest of week then 2 days no pred etc.and am OK at the moment but very achy and tired. I was really well on 1mg but my body doesn't want to give up the 1mg!

  • In your place I'd stick on the 1mg - it is such a low dose it can't do any harm but it is possible your adrenal function isn't as good as it should be and the small amount of supplementation may be enough to make you feel better. Excessive fatigue is a sign of poor adrenal function (amongst a lot of other things!).

  • Good luck making the final taper, I'm realising that after nearly 4 years on pred my body is still coping with having come off them.

    Thanks

    Rita

  • Thank you PMRpro. I was planning to stay on 1mg until I saw the rheumatologist last week and she is not happy with this. I'll see how I go with the very slow drop and just stay on the 1mg for ever (or until I run out of 1mg tabs) if I do not manage the drop.

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