Reducing steroids

Hi all & hope everyone is having a good day?

Following diagnosis of this pmr last Tuesday & put on 20 mg of pred daily (& the results have been amazing!) I have just got back from my first check up with the doctor, who is pleased with my response, but she has told me to start on 15mg as from tomorrow (she feels I won't notice this drop as it's the usual starting dose) I have spoken about my reservations on such a big drop, especially as I have my first full night back at work this weekend, but she has said to try as I can always go back up again or alternatively drop 1mg a week for the next five weeks. She also wants to refer me to a rheumy because of my age plus has given me vit d & a weekly calcium tablet. Which path would be best to take? So confused & a little apprehensive right now

Pam

19 Replies

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  • I had a friend who started on 15mg and then dropped to 10mg after about a week, off his own bat, as he felt so well. In his case it worked fine. I think his GP was a bit upset that he had not asked though!

  • Hi Pam, if you've read much on this forum, then you'll be aware of the old mantra - don't drop more than 10% in any one go.

    As you've only just started Prednisolone you may be lucky like piglette's friend and be perfectly okay, but I would suggest a drop of 2mg or 2.5mg , depending on what strength of tablets you have, may be better.

    It's much better to reduce slowly than keep going up and down - for your own morale as well as for the PMR. DorsetLady

  • I agree & mentioned the "no more than 10% drop" to my GP. She feels that as I've only been on it for 8 days that I should be ok. I did suggest that perhaps a further couple of weeks at my current dose then a few weeks at 17.5mg might make going back to work easier but she seemed to rather me reduce immediately. I really don't want to set myself back at all & nor do I want to do any damage. I probably have enough steroids to do as I choose but the I have to face her again for blood results at the beginning of March & she won't be best pleased if I've gone against her instructions..........bit of a dilemma really

    But thank you for your quick response, it is much appreciated

    Pam

  • P.s I have 5mg tablet strength at the moment but she has given me a prescription for some 1mg tablets which I shall pick on Saturday (pay day)

  • Hi Pam,

    I well understand your dilemma, it's very difficult to go against the doctor's views -especially at the beginning. She may well be correct in her assumption that as you haven't been on steroids that long it may be ok.

    Perhaps you should try it her way - you will know in a few days whether it has worked or not! If it does, then all well and good, if it doesn't you won't have been on the reduced dose long enough to do much damage. You can then ring her, explaining what happened and politely suggest you increase again.

    Sometimes you have to play the game!

    But, always remember, at the end of the day, it is YOUR body, and it will tell, more than any blood test, whether it's okay or not. DL

  • Oooo it's such a pain! My fear is reducing tomorrow & then suffering for a 9.5 hour night shift on Saturday if it fails

    Thanks again for the input x

  • If you can, why not wait until after Saturday shift before reducing? After all you are not seeing GP until next month. Just a thought. DL

  • Thank you.........sorry to be a pain

  • No probs! We've all been there. And we're all here to help one another whenever needed. DL

  • I don't know why she started you on 20mgs in the first place! 15mgs works fine for most of us and you are likely to stay pain free on it. You are already meeting the PMR dilemma- how fast dare I reduce my steroids? This is at the heart of managing the disease. The golden rule is there's no hurry. You are going to be on them for at least a couple of years and 5mgs here and there for an extra week makes absolutely no difference long term. Isn't it lovely to be pain free?! We are so lucky to have something that works. I'd drop to 15 quite happily but listen to your body. X

  • Hi PamOakes,

    I can but agree that it is your body and you know best, regardless of what your GP may advise. As has been said before the. GP doesn't feel the pain but you do.

    Also, I'm a man, and have been told that ,generally speaking, men do better on PMR than women, so your friend's experience cannot be taken as one for you to follow. I was diagnosed in January, and started at 20mg, then went to 30mg, as the pain wasn't initially under control. Back down to 20mg now after about 7 weeks.

    Good luck

  • I agree with others re listen to your body. When I started steroids 2 year ago, I started on 15mgs, but was asked to reduce to 10mgs after 2 weeks. I managed fine with no problems, till I reduced to 8mgs. You could always try and if pain creeps back you can increase and inform GP you tried it. Good luck, hope your return to work goes smoothly .

  • I started at 40mg, and came down very rapidly. Apparently it's fine to taper quickly if you haven't been on steroids for long. A short sharp burst can do the trick. It's only when you are on them for months that your own adrenal system goes to sleep. I did have problems around 10mg, but that was because I'd been on Prednisilone for many months. Easily rectified; I just went up a step and came down more gradually. I hope that helps.good luck.

  • Thank you all for your input

    After listening to to all of your experiences & only having been on 20mg for only 8 days I decided to try 17.5 mg for now to get me through first week back at work properly & see how I go.

    I'm not sure why I was started on 20mg, I couldn't get in with my usual doctor when I got my results & had to see one I hadn't seen before & it was he who started me on that amount (my GP said she would have started me on 15 mg a day & that was why she wanted me to reduce straight away). If I knew I could drop to 15 immediately with no pain returning & cope with going back to work too I really wouldn't hesitate

    Thanks everyone

  • I'd do it in two steps if I were as concerned as you obviously are but just spend a few days at the 17.5mg.

    The first lot of pred I had was just a 6 week course since the rheumy was absolutely positive that whatever it was it wasn't PMR. The 15mg dose caused a dramatic response in 6 hours which then improved a bit over the next 2 weeks. Then after 2 weeks I dropped straight to 10mg with no problems at all, then the same with 5mg. I felt pretty good at 5mg - but the rheumy said I had to stop after 2 weeks. Within 6 hours of the first missed 5mg dose I was worse than to start with. I didn't manage to reduce to 5mg again for 4 years. I suspect that reducing the dose in big steps is fine after just a week or two - it becomes a very different matter for some people when they have been on pred for longer. It has finally sunk in to my granddaughter's doctors that they can't reduce in big steps - all that happens is she gets ill again. In smaller steps she's OK. Everyone is different - but you can go back to a higher dose if you have problems.

  • This reply has been so helpful & I trust your advice & will follow this.....thank you so much

  • Pam, although 15mg is the recommended starting dose for PMR, some doctors do feel that hitting the inflammation hard with a 20mg starting dose can be more successful. 20mg is also sometimes recommended in cases where a patient is very overweight.

    In the case of someone like yourself who has to continue working, it is especially preferable to err on the side of caution and reduce in smaller rather than larger decrements. Those of us in retirement can't help but be in awe of those of you who have to work with this condition, especially in the early days of treatment. I do hope that your job isn't too stressful and you manage to give yourself lots of TLC outside working hours whilst the steroids do their job of getting the inflammation under control.

  • You can reduce with no tapering in the first couple of weeks even to zero, while after that it could be disastrous. In fact the Bristol doctors suggest the PMR sandwich as diagnosis, a week on vit C, a week on steroids, then a week on vit C and no steroids. So reducing to 15mg should not cause steroid withdrawal in the first week or so. Sometimes 20mg is given for slightly larger people.

  • Thank you all!!

    I feel much more positive about the reduction now & will take the 17.5 mg for a week then drop to 15 & see what dr says after that. I feel good & fit to go back to work now & my boss has eased me in to one afternoon & 1 night this next week (usually just do nights).

    I don't know why I was started on 20mg..........I'm a size 12 physically fit & healthy person as a rule that (up until Xmas) had 3 horses two dogs & chickens plus land management to deal with!

    I appreciate all your advice as it gives me the confidence to move forward without so much fear.......thank you

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