Stuck on 10mg pred

[Hankb]

I was diagnosed with PMR in November last year and was started on a dose of 20mg a day pred. I am now down to 10mg a day for the past two months and find that when I try to reduce to 9mg I get a slight pain in my shoulders in the morning which reduces but never really goes away as the day goes by. I'm scared of a flare as I don't want to go backwards on this journey. Should I tough it out or should I remain on the 10mg dose for longer. In addition I also suffer from fatigue which has been the case ever since I started on this journey. Thanks in advance for any advice.

[MiloCollie]

Hi. I’m at a similar stage to you. It depends how soon you want to get off the steroids and how much you can put up with the aches and pains. I’ve got diabetes and have a few issues with it so I’m trying harder to taper. I was worried about the drop to 9mg but it’s been ok so I’m glad I just persevered. It’s scary but sometimes you just need to go for it. Good luck

[Hankb in reply to MiloCollie]

Hi MiloCollie. Thanks for your encouraging reply. I also have other issues I finished a course of radiotherapy for prostate cancer earlier this year which may also have affect on my overall health. Bedt wishes

[MiloCollie in reply to Hankb]

Yes I bet. I’m so sorry about the cancer and I hear radiotherapy can be rough. We have all these other things to deal with as well as life itself. I underestimated stress and it’s impact. Be kind to yourself.

[Hankb in reply to MiloCollie]

Hi MiloColie. Thank you for your support and best wishes to you.

[DorsetLady PMRGCAuk volunteer in reply to MiloCollie]

“It depends how soon you want to get off the steroids and how much you can put up with the aches and pains.”..

Not necessarily so….

no-one wants to be on steroids longer than needed, especially if you have other issues that may be exacerbated by Pred, but if the inflammation is not under control (hence the aches and pains) it could be doing invisible damage. If that the case, you end up with more problems…

plus there’s a fine line between taking enough and having a decent QOL and not..

[Hankb in reply to DorsetLady]

DL thank you for your reply, I'm following your tapering plan but appear to be stuck at the moment on 10mg, I do have other issues plus my wife has been in and out if hospital for 2 months with a knee replacement which resulted in complications which is probably adding spme pressure to my situation.

[DorsetLady PMRGCAuk volunteer in reply to Hankb]

Well in that case, just stay where you are at the moment…..there is no point in trying to push the tapering with so many other things going on.Best of luck to both you and your wife…

[MrsNails]

Hi Hankb - you’ve done very well to half the dose of your Pred in just shy of 12months - it’s not a case of tapering to Zero no matter what but to find the dose that suits you best to keep the PMR at bay. Maybe stay at 10mg a bit longer, say a month then try again but maybe try 9.5mg this time. Do you use one of the Slow Tapering Methods? You’ll find them in FAQ’s

Radiotherapy can cause tiredness both during & following treatment so don’t be too hard on yourself.

Kind Regards

MrsN

[Hankb in reply to MrsNails]

Thank you for your reply. I am using DL tapering methods and have now also got the syrup form of pred whereby I can measure the doses more accurately than with the tablets which are only available in 5mg size. I used your suggestion that I try to obtain liquid pred which now enables me to reduce at a much slower more controlled rate of 1mg pred at a time if necessary.

[MrsNails in reply to Hankb]

I’m so pleased you were able to source the liquid & so help with the Tapering. Good Luck 🍀

[Hankb in reply to MrsNails]

That was a great piece of advice MrsNails using the syrup is such a blessing I can now measure precise dosages, previously it was very much hit and miss. Thanks again

[Meggsy]

Hello Hankb, I took 3 attempts to taper from 10mg. I was finally successful when I tried 9.5mg and have tapered by .5mg since then. If your pain occurs almost immediately after your reduction it is probably withdrawal pain and should subside in three or four days. A flare occurs a week or more after the reduction. I have have a couple and they were almost two weeks after the taper. All the best and be kind to yourself.

[Hankb in reply to Meggsy]

Thank you for your advice Meggsy I'll remain on 10mg for a week and then reduce by a small amount and see how it works for me,

[piglette]

I have learnt from bitter experience it is not worth trying to tough it out, PMR will win in the end. I find it is better to go back to the point I was comfortable and then try again a while later. Having a flare will slow you down more than staying at a slightly higher dose and also it is not that pleasant!

[Hankb in reply to piglette]

Thank you p. From all the good advice I've been given from the forum I'll proceed with caution and not rush the tapering.

[piglette in reply to Hankb]

That is sensible thinking!!

[HeronNS]

Anyone getting stuck for a long time at a particular dose who is not yet already trying to taper using a slow method could give one of those taper plans a try. Check out the FAQ post under Taper. A slow plan gives the body time to adjust to a lower dose. If a slow method still doesn't work, then that means the level of disease activity still requires the higher dose, but very often people find they can come down a bit. Half mg steps can be easier, if your pills are uncoated and therefore can be cut.

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Hankb is using my slow tapering plan, but has other stresses at the moment which seem to be causing problems.

[Hankb in reply to DorsetLady]

Yes I guess the combination of the the two are compounding the problem.

[DorsetLady PMRGCAuk volunteer in reply to Hankb]

..and understandably so.

[Hankb in reply to HeronNS]

Hi HeronNS. Thank you for your reply. As DL has mentioned I also have other issues besides PMR which included radiotherapy treatment for prostate cancer earlier this year. In addition my wife has just had a knee replacement operation which resulted in some complications causing the surgeon to reopened the wound due to an infection. She is currently still in hospital but hopefully she will be discharged sometime this week.

[PMRpro Ambassador]

healthunlocked.com/pmrgcauk......

is a set of links with advice about managing fatigue in autoimmune disease - it is an integral part of most of them and there is no pill for it - just pacing and resting appropriately.

But a word of warning - whatever approach you take to reducing the pred dose, you are NEVER reducing relentlessly to zero. You are looking for the lowest dose that manages the symptoms as well as the starting dose did. If you go to too low a dose at any point and leftover inflammation starts to build up then eventually the dripping tap will fill the bucket and overflow - and you ma well end up back where you started and needing more pred.

[Hankb in reply to PMRpro]

I hear what you are saying, ie not trying to reduce to zero but to the lowest dose that will manage the symptoms, I will use that as my guiding light. Thank you.