Taper by 1/2mg or 1/4mg from 2 1/2mg down?

[SufferingPMR]

Hi - I need some advise please.

I have never really felt completely well and stiff free since the beginning of taking Prednisolone in April 2022.

The Rheumatologist nurse has now prescribed Methotrexate, which I started a month ago and I know it can take up to 3 months to make a difference, if it is going to at all.

I sleep really well most of the time, but do find around 4ish, should I wake, that my shoulders and in particular my left one is painful and stiff and my hips too, to a lesser extent. By 6:30, when I get up the pain has subsided and the stiffness much less.

I am currently on 2 1/2mg and I have been following dorsetlady's 7 week plan for reduction + I add another week at the lower dose before continuing downwards reducing by another 1/2mg.

My question is: should I now reduce by 1/4mg every 7 weeks or stay with 1/2mg? The Rheumatologies is keen to get me off steriods now, as I've been on them for nearly 3 years. Fingers crossed the Methotrexate will help, but no sign of that at the moment.

Many thanks for all your help and advice, I do come online every day to read about everyone's issues and find your answers most informative.

[PMRpro Ambassador]

Sorry - the chances of the MTX replacing pred when the PMR is still active, and I'd say yours definitely is, are not guaranteed. It works for some, a few, but not many. Only 3 years in it is likely the PMR is still there - and it is NOT unreasonable. PMR does NOT magically go away in 2 years, that is a myth.

To be at 3mg after 3 years is pretty good and I wouldn't agree to take MTX in the hope it might get me off pred.

[SufferingPMR in reply to PMRpro]

Thank you for your answer. I have already agreed to take MTX having previously resisted it, hopefully if it doesn't make any difference I will come off it again soon.

[PMRpro Ambassador in reply to SufferingPMR]

Just attended a research meeting where a lovely young GP was all worried about her patients getting stuck at 3-4mg after a couple of years. So I piped up and explained the titration concept to find the lowest effective dose and told her that her patients were actually doing VERY well. Prof Sarah Mackie was at my heels to confirm SHE also thought they were doing very well - and so was the young GP!

Adding MTX with its potential adverse effects when at patient is already down to 3mg and well is crackers!!!!! It doesn't cure anything either!

[DorsetLady PMRGCAuk volunteer]

I’d stay with the 0.5mg [0.25mg is really fiddly] … but you can always extend the taper if you feel a bit uncertain… just repeat each week.. gives the 14 week taper as per my plans… You may still have the file I sent some time ago… if not, I can re-send..

[KerryIreland in reply to DorsetLady]

Just wanted to say that I don’t find cutting the pred into quarters a problem. Now going between 2.25 and 2mg. It seems to make for a smoother transition (and I need that as our house is on the market with all that entails!)

[DorsetLady PMRGCAuk volunteer in reply to KerryIreland]

Okay that’s good some find they crumble too much.. good luck on the house sale…

[Bcol in reply to KerryIreland]

The 1mg tablets I had were so small that cutting the in two was quite "interesting", cutting them into four would have been a nightmare.

[KerryIreland in reply to Bcol]

I bought my pill cutter online… It’s called Safe + Sound. The quarters are tiny but I don’t seem to get “crumbs”!

[Bcol in reply to KerryIreland]

The pill cutter is fine, it's the size of the tablets that was the problem. Fortunately I'm off them now. At least unless/until it returns.

[KerryIreland in reply to Bcol]

We’ll done! And good luck.

[SufferingPMR in reply to DorsetLady]

Thank you, my pill cutter is pretty good so I will give 1/4mg a go and will repeat each week as per your taper plan, which I follow, but I think I will also extend the time I spend at the end of each taper on the new dose by a month.

[Poetryb]

Sorry to hear of your troubles. I am going to keep my reply short. I followed Dr advice and only asked for more tablets once. After that I decided that exercise in the form of beginners Pilates would help. Also reducing refined sugar, drinking lots of water and making home made vegetable soup. Today I shredded a leek a carrot and a small potato, cooked them in a tablespoon of oil and then added boiling water to cover. I added pepper, forgot the tumeric as have run out and a little marmite instead of salt. Blend with a hand blender. I also use oat milk in drinks. You could try it if it appeals.

[SufferingPMR in reply to Poetryb]

Thank you for your suggestions. I do intermediate Pilates once a week, walk the dog for 2 + miles every day and Pickleball once a week too. It does easy the stiffness and has great benefits to my mental health, as well as a great way to socialise with other people who suffer from various illnesses.

As for my diet, it is all cooked from scratch and we keep to a low carb diet as my husband is diabetic. Currently I don't drink alcohol - doing dry January, but may have a glass of wine at the weekends going forward and I might eat a homemade cake once a month at a meeting, but that's about it. I don't want to go Keto, as I'm not a great meat eater (2 or 3 times a week is max to please my husband) and I love fruits and vegetables.

Not sure what else to do except wait for this disease to go into remission, whenever that may be.

[Poetryb in reply to SufferingPMR]

Good you are doing all the right things. I pray you will be in remission soon.

[ImC_]

For what it's worth I'm part way from 2.25mg to 2.0mg. It's not been that difficult cutting the 1mg into 4 probably-slightly-unequal pieces withy cheap pill cutter and anyway it averages out. Been taking it so slowly over the last 4 years, not going to rush things now.

(I take mine at 4am.)