I am really struggling with my dosage of Prednisolone.
I started on 15mg in June, down to 12.5mg in July, then to 10mg in August as instructed by doctor.
Manged to go to 9mg but then had to increase back up to 10mg as I had a flare. This was fine until 3 weeks ago, when I had another flare, and had to increase to 12mg. Then managed to reduce to 11mg for the last 2 weeks, just thinking at what point should I reduce to 10mg as I had been feeling so much better, when bang...2 days ago the pain returned.
Any advice gratefully accepted.
Thank you.
Written by
greencyclist62
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As we seem to say on her [almost every other day, if not every day] the taper you have been given may be in the guidelines - but that doesnt mean it works for everyone. It does also say it should be amended to suit individuals -but somehow most doctors don't bother to read that bit!
However, as we also say regularly you need to do you bit as well, you have a serious systemic illness and need to treat yourself as such.. new normal, not old normal!
Thank you, I have had to go above the 10mg already for the past 3 weeks. I've just looked at the protocol and not sure whether to increase from 11 - 12mg for a week, or hope that symptoms will subside after the 5 days. Unfortunately I am allergic to Paracetamol, and shouldn't be taking anti-inflamatory.
Paracetamol usually does nothing for PMR pain so is pretty irrelevant in a flare anyway.
One problem you need to be aware of if you have been fine at a dose and then the symptoms return is that sometimes PMR can progress to more. Have you spoken to your doctor about the increase in symptoms?
I would say that you had overshot the dose you needed when you got to 10mg, you need a bit more than 10mg though how much more is impossible to say. So as DL says, just adding a couple of mg to the point at which you flared isn't enough to clear things out. And when you drop the dose from 15mg, I wouldn't go further than 12mg and then I would continue to taper not more than 1mg at a time and using one of our slowed taper approaches.
I find it so sad when doctors get us to reduce ultra fast and then we react because of it. Slowly but surely seems to work so much better and means that we avoid a lot of pain and anguish. The fact the pain has returned DON’T REDUCE. PMR always wins. You really need to feel like you did when you first took the steroids and they worked, before reducing again.
Hi, this standard decrease GP's use 15 ->12.5 -> 10mg/day, I tried 3 times and as soon as I got to 10mg the fatigue in my legs in particular became far worse and with help from this forum I saw that this taper would probably never work for me. I talked to me GP and he listened and we agreed that I went back to 15mg /day and stay there for a month. Since then I'm reducing by 1mg / month and now I'm on 11mg/day and will start on 10mg/day next week. So far so good and whilst the background leg fatigue is still there I'm feeling no real pain. If I get to be on 10mg for a month with no relapse I'll taper from then probably at 0.5mg per month. Good luck.
Dear Byebyebicycle, the only thing I would share is that for me tapering every six weeks by 1mg. works much better--- also I start all taperings with 2 weeks of every other day (old dose-new dose---) --- All the best,
Going directly to alternating the dose like that can still be quite a change so we recommend slowed tapers as linked by DL - they introduce the new dose even more slowly.
I am trying the 5 week taper regime, thank you for sending the link. Can I just ask, when I'm on week 5 which is the whole week on the new dose, do i then stay on that dose for a month, then start the taper. Or do I go straight into the taper after week 5?
Hi, you have had good advice about tapering your dose more slowly and I should also mention that you do have to play your part in reducing your activities even if the steroid has made you feel much better.
So many of us have felt restored to normality once the pain and stiffness is reduced by the prednisolone and been sadly reminded that PMR is a complex systemic illness which must be taken seriously. Many of us will never have faced a long term and often life changing illness and it takes a while to get to grips with it and the one and only drug which really helps but is also causing its own problems.
With that in mind you may find that for now you need to stick at 11mg for a while and only try to taper your dose when your body tells you it is ok. The protocol doesn’t take account of you or your activities and your doctor might not have much experience of PMR either. On here we are the lab rats who have lived the experience and happy to share.
Zebedee44, My activities have been seriously curtailed by PMR but it's important to me to keep active. Cycling was the first casualty and long walks has followed. Shorter walks of a km or so and at least twice a day and swimming 3 days a week seems a good balance for me at the moment. I'm on my 23rd day at 11mg and at the moment I plan to start to taper to 10 in 5 days. I will probably do that according to DL's taper plan. Thanks for the support, best wishes.
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