So frustrating

[greencyclist62]

Hello everyone,

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.

[DorsetLady PMRGCAuk volunteer]

I'd be inclined to try the flare protocol, see here - returning to 10mg.. and then stay there for a month - provide all okay then 0.5mg per month...

healthunlocked.com/pmrgcauk...

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!

[greencyclist62 in reply to DorsetLady]

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.

[DorsetLady PMRGCAuk volunteer in reply to greencyclist62]

The odd 1 or 2mg is unlikely to sort it out. A flare need an extra 5mg for at least 7 days.. then you can drop back down.

Don’t understand your comment re paracetamol-didn’t mention it.

[greencyclist62 in reply to DorsetLady]

No sorry, I was confused about the paracetamol from the protocol.

Thank you I really appreciate your advice, I will increase to 15 for 7 days and see how that goes.

[PMRpro Ambassador in reply to greencyclist62]

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.

[piglette]

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.

[greencyclist62]

Thank you for the advice. I was feeling so good on the 11mg for 3 weeks, haven't yet reduced and now looks like i've got to increase again to 12mg.

[byebyebicycle]

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.

[Chiqui1950 in reply to byebyebicycle]

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,

[byebyebicycle in reply to Chiqui1950]

Chiqui1950, thanks for the advice. I think it's a good idea for me to start the old dose -new dose regime going from 11 to 10mg/day. warm regards.

[PMRpro Ambassador in reply to byebyebicycle]

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.

[DorsetLady PMRGCAuk volunteer in reply to byebyebicycle]

Use one of the slower tapering regimes - tried and tested over the years-

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[greencyclist62 in reply to DorsetLady]

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?

[DorsetLady PMRGCAuk volunteer in reply to greencyclist62]

It really depends on how you feel..to start with I’d maybe stay an extra week.

Most times I went straight onto to new taper, but occasionally if I felt a bit ‘not sure’ I’d give it another week.

In time you will get to know your body and illness - and will be able to gauge what’s best for you.

[Zebedee44]

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.

[byebyebicycle in reply to Zebedee44]

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.