Too soon for a taper?

[SNOWYROSE]

Hello, I have learnt a lot from this site, thank you to everyone.

Diagnosed with PMR on 6 July 2020 I started on 30mg for 5 days, then down to 25, and 20 and 15 without trouble in August. From then I followed GP s advice to further reduce to 10, but did a lot of yoyoing, as this did not work for me. Fed up, I eventually at beginning November settled on staying at 15 to stabilise. Did stabilise. The Doc is still nudging me to reduce, so 1st Dec I started the Dead Slow Nearly Stop DSNS, from this site, reduction to 13.5, which is 10%. Now at end December, a lot of pains and stiffness are reappearing quite strongly. This is in the morning. I take pred at 7am and by noon all symptoms lessen. However day by day right now each morning pains/stiffness are increasing. Reading on this site could this be steroid withdrawal? Or have I tried to taper down too soon?

In the taper I have got to the point where old amount and new amount are 1 day each. I was going to stretch this phase out for maybe a month because of the pains. But should I regard this as a flare? Return to daily 15mg, or even up it to 20mg for a few days? Or anything else? Thanks for any advice or comments! R x

[PMRpro Ambassador]

I'd assume it was a flare after this time and I would try the 15mg first - and next time, I'd try 1/2mg. Some people can manage 10%, some can't. Even 1/2mg is the difference between being enough and not.

If you had the morning pain and it was steady it would be acceptable - the fact it is increasing means it isn't, there isn't enough pred to clear out each day's new dose of inflammation so the baseline is creeping up.

My personal opinion is that your GP has contributed to the problem - dropping from 15 to 10 may work in any other use of pred, it almost never works in PMR and once you flare and then get into a yoyo pattern with the dose it just adds to problems. However, although I need 15mg still (after a very long time on pred and even longer with PMR) it is unusual and your GP needs to refer you to a rheumatologist because it should be established that it really is PMR rather than any of the other things that can look like PMR and also respond to pred - another error on the part of the GP, 30mg is too high to use for PMR, it isn't conclusive but only PMR responds dramatically to up to 20mg. giving another clue to the diagnosis. It doesn't always but needing 30mg would point to it maybe being something else.

[SNOWYROSE in reply to PMRpro]

Thank you, PMRpro. I will stick with 15mg again. I have another blood test on 29 Dec, and after that I get to speak to the GP, and will bring up about a rheumatologist. By the way, earlier on a private message I asked you about the digestive probs I was having, and your advice was to ask for enteric coated pred. I got them, and it has helped enormously. Thank you for that too, R x

[PMRpro Ambassador in reply to SNOWYROSE]

You do know that it also comes in 1mg tablets? Makes the reducing in 1/2mg steps simple - no need to cut anything or take plain pred (you can't cut the e/c ones anyway)

[SNOWYROSE in reply to PMRpro]

Yes, thanks, I have 1mg, 2.5mg and 5mg sizes.

[PMRpro Ambassador in reply to SNOWYROSE]

Excellent!!

[katiemills]

Hi Snowy RoseI agree with everything PMR pro says, of course, but my experience might be helpful to know.

I’ve had a very similar journey to you , but the difference is my GP referred me to a rheumy because I needed 30 mg pred and he wanted to confirm whether or not I had PMR . I had various tests and it was decided that I did have PMR. I managed to taper to 20 mg and thereafter tapered half a mg at a time using Dorset lady’s taper plan. 10 per cent was far, far too step a reduction for me .

Because I was struggling , my rheumy suggested taking methotrexate as well , which I refused until I got to 15 mg and it was getting harder and harder to taper. So at 15 mg pred I started on the methotrexate and still only tapered half a mg at a time .

I got down to 10 mg without any problems but it’s been very hard to get much lower. I got to 8.5 mg and had a flair so went back to 10 mg. I’m now on 9 mg and will attempt another half mg next week , but if that’s too difficult I’ll go back to 9 mg.

My GP and rheumy would ideally like me to get to 7 mg but they aren’t pushing me and accept that 9 mg may have to be my sticking point. I’ve had PMR nearly 3 years now.

I hope this helps ! Good luck !

[SNOWYROSE in reply to katiemills]

Thank you katie, really brilliant to hear your experience. Its a huge help. I dont know anything about methotrexate, but will look it up.

Are you still on it now? I mean has it carried on being useful?

[katiemills in reply to SNOWYROSE]

Hi there . Yes I’m still on it and I definitely feel that it has helped me to reduce the pred. It’s called a steroid sparer and it’s meant to help with steroid reduction, taking on some of the work of the steroid . My rheumy and GP say all drugs have their side effects , but they both believe methotrexate is the lesser evil of the two. I know a lot of people on this site disagree with that statement , so you’ll have to make your own mind up!

Some people find the side effects very unpleasant so I am one of the lucky ones. I did feel very unwell when they increased my dose from 10 mg to 15 mg, but then they increased my folic acid dose as well and that made a huge difference and I’m fine on it now.

Your GP can’t prescribe it , it would have to be a rheumy , but as PMR pro says , you should definitely ask to be referred to a rheumy anyway . 30 mg is not the usual starting dose for PMR, 15 mg is , but I think some people ( like me and maybe you) don’t absorb prednisone as well as others do.

If you’d like to talk more , don’t hesitate to private message me. Best wishes, Katie x