I'm a bit confused.........

[Janann25]

.......... which happens sometimes!!

I started my first three week reduction on Sunday and followed the doctor's suggestion of reducing from 15mg to 12 and a half. So far I feel OK in myself but I do have increased pain in my neck and shoulders. I have learnt from this forum that this is a very good indication that the reduction is too much but my problem is that I've had severe arthritis in my neck and shoulders for a long time which was the reason I took so long to see a doctor - I didn't even know that something called PMR existed.

I'm just wondering whether anybody here has had the same experience and could advise me what I should do.

Again, many thanks

Jan

[PMRpro Ambassador]

You have a choice: stick it out and see if it improves which, if it is steroid withdrawal discomfort it should. Or go back to 15mg for a few days and start the reduction plan again with something that is easier.

No reduction step should be more than 10% of the current dose when you are tapering - there is a difference. Reduction is reducing the dose to get off pred. Tapering is reducing the dose to find the right dose for you: the lowest dose that manages the symptoms as well as the starting dose did. 2.5mg on a 15mg dose is far more than that. 1.5mg is the ideal but many people find even that is too much. So is going from every day 15mg to every day 12.5mg for many.

You could either try just 1mg at a time - 1mg every 2 weeks is easier on the PMR-ravaged body in every way and is still 2mg in a month - or you could try the Dead Slow approach which a lot of people on all 3 forums have used successfully and almost everyone has said the first return of symptoms came at their end point dose.

healthunlocked.com/pmrgcauk...

There are other similar plans that individuals have worked out but they all do much the same thing, they smooth out the steps a bit. But your guideline is the status you achieved to start with - your arthritis won't respond particularly well to pred.

[Janann25 in reply to PMRpro]

Thank you so much for your quick reply and advice. If the Pred doesn't affect the arthritis symptoms, then I think it probably is too quick a reduction. I think I'll go back to 15mg tomorrow and also phone the doctor to see whether I can have a prescription for 1mg - the smallest ones I have at the moment are 2 1/2mg. I'll let you know what happens.

Jan

[DorsetLady PMRGCAuk volunteer]

Hi,

Totally agree with PMRpro, could be steroid withdrawal, but much more likely to be too big a drop. You do need 1mg tablets, then you have much more choice.

Quite agree that arthritis pains muddy the waters, at 15mg they will be dampened down a bit but not completely. You can take paracetamol or cocadamol alongside Pred for that if necessary.

Good luck

[Janann25 in reply to DorsetLady]

Thank you - I will ask for some 1mg tablets but unfortunately I've just phoned the surgery and they have no appointments left for today - we can't make appointments in advance so I'll phone early tomorrow. In the meantime, I'll go back to 15mg tomorrow and see what happens. Great, this illness - not!!

Jan

[PMRpro Ambassador in reply to Janann25]

Have you got enteric coated 2.5 or plain ones? Enteric coated 2.5mg pills are usually brown, 5mg red. Ordinary ones are - well, ordinary white usually

[Janann25]

My 5mg tablets aren't enteric coated but the 2.5mg are. I'd considered halving the 2.5mg but thought it not advisable to do that. I think I'll just up the dose tomorrow - I'm not in so much pain that I need to take an extra 2.5mg today. As I said in a previous post, this is definitely DIY treatment 😊

Jan

[HeronNS in reply to Janann25]

Quite right, the coated tablets are never to be cut. You could try the fun of cutting an uncoated 5 mg into quarters.

[Janann25 in reply to HeronNS]

Knowing me, I'd end up in A&E with an amputated finger!!! 😀

[Rugger in reply to Janann25]

I bought a pill cutter from the local independant pharmacy - a little plastic box with the blade safely enclosed! About £2 and worth every penny. I tried 4 other pharmacies before I found it - the supermarkets and Boots didn't have them. If I get one good half and the rest crumbles (but not always) I take the crumbs today and leave the good half for tomorrow!

[Janann25 in reply to Rugger]

Thanks - I shall be on my way to the chemist this morning!

[PMRandRA in reply to Rugger]

Not a good idea to open up enteric coated pills. The coating is there for a reason - protection.

[PMRpro Ambassador in reply to Janann25]

Mixing the 2 sorts isn't really ideal - the uncoated sort are absorbed within a couple of hours at most and make a higher spike than the coated variety which can take up to 5 or 6 hours or even longer. Perhaps worth considering.

[Janann25]

Yes, I'll have to think about that. I managed to speak to the doctor and he agreed that a slower reduction was probably better - why do they suggest the fast route when they agree the slower is probably better?!! - but my prescription won't be ready until later. Unfortunately he prescribed about 50 x 5mg last week (uncoated) but I won't know until I collect these new ones whether they are coated or not. This illness certainly isn't easy 😡

Jan

[piglette in reply to Janann25]

I think doctors go for gold and hope people can reduce as quickly as possible, of course a lot us cannot keep up with their bat out of hell approach, although some do, they then have to give in to a slower reduction, although some of them put up quite a fight!

[PMRandRA]

Oh yes indeed. Doctors do annoy me I have to say. They have no flipping clue as to how the reduction should be approached and it is not by jumping off the top level of the diving board.

Anyway, if you can battle on for a month to see if you get an improvement now then that would be good. If not then I would suggest you increase by 1mg and see how it goes. Give it a few days on the 1 up dose to see if it is painfree or relatively so.

If very bearable then hold that dose for at least a month before re -starting reduction, slowly, very very nerve cringeingly slowly. And listen to every message that your body sends you. If it is bearable, then carry on. You will get there.

Keep in touch ❤️🌷🙃