tapering increments

[Storm-boy]

I have just successfully tapered from 8mg to 7mg using the NSNS method with a few small twinges along the way. Do you think I should start the next taper immediately and by .5 mg or 1mg

Thank you for your absolutely invaluable advice once again.

[PMRpro Ambassador]

The basic rule top experts in tapering pred have stated is not more than 10% of the current dose. So as you get closer to 5mg, 0.5 decrements are preferable.

[DorsetLady PMRGCAuk volunteer]

Certainly reducing by. 0.5mg from now on would be a good idea - but maybe not immediately.

If you had a few twinges on last taper perhaps staying at 7mg for a few weeks would be sensible, PMR and adrenal wise.,,,

[Storm-boy]

Thank you DorsetLady and PRPro for this advice. Sounds very sensible. I have to control my impatience as I can see from previous post ‘slow and steady wins the race’

[DorsetLady PMRGCAuk volunteer in reply to Storm-boy]

Certainly does! Good luck.

[PMRpro Ambassador in reply to Storm-boy]

It ain't slow when it works!!!!!!!

[piglette]

Personally I would reduce by 0.5mg from now on. In fact I reduced by 0.5mg below 10mg. As you reduce 0.5mg becomes a larger and larger percentage reduction.

[Storm-boy in reply to piglette]

Thank you. I would feel much more confident with .05.

I don’t know where I’d be without you guys 👏👏👏

[DorsetLady PMRGCAuk volunteer in reply to Storm-boy]

Up the proverbial creek without a paddle!...and the amount of rain Oz has been having lately it won't be dried out...🙂

[Storm-boy in reply to DorsetLady]

haha. Absolutely. Sooo much rain. Wettest Melbourne Cuo for 100 years

[Hidden in reply to Storm-boy]

I don't want to burst your bubble and we're all different. I did DL regime, worked well till I reached 10mg then flare. So increased and at that time I tried reducing every month by 0.5mg....still run into trouble. It seems my body wants 6 or even 6.5mg which I've taken today. I've been reading (as I have my suspicions that I may now have RA too) So requested a blood test which I'm having tomorrow morning at 8:00 am. Forgot to ask for the Rheumatoid factor to be included. The Anti-CCP test. In the PMR information on-line it says if one has trouble reducing from 10mg it's likely you have RA. Oh, I do hope not, not another auto-immune disease to add to PMR/GCA and OA.

This one is for the experts. Would CRP be higher than 6 if I did have RA, or would that specific Anti-CCP test be required ? My doc, ages ago, told me that it would be higher, not sure whether to trust him on this as he couldn't diagnose my PMR back in Nov 2019.... could have gone blind as GCA set in 3 months later. Fingers are now very painful and stiff, knees hurt, hips hurt and an achy jaw....oh dear, feeling a bit fed up now !!

[PMRpro Ambassador in reply to Hidden]

"In the PMR information on-line it says if one has trouble reducing from 10mg it's likely you have RA"

Honestly Anne - don't believe everything you read online!!! If it is difficult to reduce from 10mg it does not necessarily mean RA. If it did there would be a lot of us who would have it and I certainly have no signs of RA anywhere! That was written by someone who believes the old ideas that PMR doesn't last long, is a benign, simple, self limiting disease which is a long way from the truth. YOu MIGHT have RA, but equally, you might just have GCA with PMR symptoms.

I would be far more suspicious that you have overshot the pred dose you need for the GCA - as we keep saying, you need what you need and you aren't reducing relentlessly to zero. Half a mg can make a BIG difference.

[Hidden in reply to PMRpro]

Never thought of that and forget I mustn't believe everything I read.

So you think 6.5 is too high then. I'm afraid it could be GCA with my achy jaw. Trouble is PMR/GCA have same symptoms so how the heck do we know which is which. So hard to differentiate. Surely it's better to be safe than sorry by increasing slightly. I took 6 on Sunday and again yesterday, didn't see any differnce hence why I decided to add a half. Just never sure how long to stay on it, until I see a difference I suppose. I'll wait and see what the CRP/ESR turns out. Hopefully, when I see a new doc this Friday he will have the result. I feel absolutely fine in myself.

Hubby still in a great deal of pain. I keep telling him it's only 2 weeks this Thursday since his surgery. Again, when I googled NHS length of time with pain after hip surgery it said between 2 and 4 weeks.

Getting those elastic stocking back on him after his shower every morning is so hard, I'm sure they've measured his legs incorrectly. The pain in my fingers trying to pull them up his legs is dreadful.

Thanks for your reply Eileen.

[PMRpro Ambassador in reply to Hidden]

"So you think 6.5 is too high then" - no, not at all, I didn't say that, not too HIGH. What I said was tha being 1/2mg too low can allow symptoms. However, just adding 1/2mg when you already have symptoms isn't always enough to stop them immediately.

PMR and GCA don't have the same symptoms - you can have PMR symptoms if you have GCA, but you really only need to worry about GCA if you have GCA symptoms - the ones you don't have if you only have PMR, Headache, jaw pain when chewing, that sort of thing.

I doubt they have measured him incorrectly, the stocking won't do what they are meant to if they are too loose. And trying to get them on immediately after a shower isn't going to work, they are difficult enough anyway! Use a hair dryer to dry his legs and then try. Have you got a stocking butler? That makes a massive difference - OH could put his own on using that. Stretching the stocking is hard for anyone, especially older hands. They don't cost much

youtube.com/watch?v=RS12lRx...(Not working as expected?)

[PMR2011 in reply to Hidden]

turn the stockings almost all the way inside out (except for 3-4 inches at the toe). Put the toe bit over his toes, then turn the stocking right side out over his leg. 15 years working in a heart surgery unit taught me that!

[Hidden in reply to PMR2011]

Yes, in the end I figured that out. Still hurts my poor arthritic fingers though. Had my blood test taken this morning and request the Anti CCP test for RA. She had to go and ask the docs permission before she could add that. He said yes, so I'm pleased about that.

[123mossie]

Everything others have said, plus you are entering adrenal territory now from 7 mgm downwards so it may be a good thing to brief yourself on that, plenty of info in FAQs. The slower the better for adrenals too.

[Bcol]

Agree with all said so far and don't feel constrained to start the next taper just because that's what the schedule says, if it doesn't feel right to start the next drop then stay where you are until you feel ready.

[Hidden in reply to Bcol]

I totally agree with you Bcol. Something I have done for myself but still doesn't seem to work. All Rheumatologist want to do is get us off the Prednisone, despite the pain. Mine isn't bad, so can't call it a big flare, just niggly. See how I go back on 6.5mg but was told by rheumy in Sept if I have a flare below 5mg she recommended Methotrexate....something I'm really reluctant to take. Plus how will that help with the pain when continuing to reduce the Pred, what exactly does the Meth do ?

[MDT1]

i agree with all that others have said .. slowly, sslowly. Can i just ask, what is NSNS method please?

[Gaz227 in reply to MDT1]

I was wondering about that method was also , I only ever use the dead slow method ,

[DorsetLady PMRGCAuk volunteer in reply to Gaz227]

MDT1 & Gaz227 -thinks it’s a typo -should read DSNS -unless Storm-boy has developed an Aussie version 😊

[Storm-boy in reply to MDT1]

oh sorry. Typo. DSNS. Dead slow nearly stop. So good.

[MDT1 in reply to Storm-boy]

ah.. thanks... thought you'd come up wuth summat exciting & new!? 😔🤣

[TheMoaningViolet]

Hi, this is all good advice. Try to feel settled at any level where you had issues during taper and make sure nothing else is happening that could distort your experience (any change in lifestyle, travel, other health issues) as much as possible. Also, be prepared to make the taper longer or stop. As mentioned above, at this level the adrenal issues arrive. Good luck.

[Storm-boy in reply to TheMoaningViolet]

thank you everyone for such wonderful advice and support