Should the pain return after the first taper?

[LozzaSandstrom]

Hi everyone - my first post as only "diagnosed" with PMR 3/4 weeks ago as a process of elimination. I was on 15mg and now have decreased to 12.5mg and after a week the pains in my arms and feet are definitely back - worse in the mornings - not as bad but back, so I wonder, how on earth will I be able to taper more and more to eventually zero?

I wonder if its something else, I do have arthritis in my back, hips and feet and I take 6 ibuprofen a day too for the pain in those, but I was really hoping that the pain free would last longer than the first 3 weeks and taper?

Also I feel like my arms are huge already, and as I am already overweight due to of course eating too much and not moving around enough, I cannot afford to put any more weight on - seems a vicious circle to me - pain or even more bloated...

[DorsetLady PMRGCAuk volunteer]

Hi and welcome

Although 15-12.5mg is a recognised taper, not everyone can manage it as you’ve discovered. Probably not helped by not being on initial dose for long enough -really need at least 4 weeks -but doesn’t sound as if that happened.

You need to advise doctor-and suggest you go back to 15mg get things under control and then taper by 1mg a time. If he’s sensible, he will agree.

You shouldn’t really be taking ibruprofen as well as Pred -together they can cause stomach issues -so you need to discuss that and change for another type of painkiller (not a NAISD which is what ibruprofen is).

Might like to have a look at this - give you more info on your illness, and how to manage it better -then you will be able to reduce and be painfree -

healthunlocked.com/pmrgcauk...

[LozzaSandstrom in reply to DorsetLady]

Thats so helpful thank you - yes I was only on the 15mg for 2 weeks but that was me wanting to taper asap as I cannot afford to be bigger - I also take Lanzoprazol so I am hoping that its not damaging me - I will definitely look into that thank you so much for your reply its appreciated. So much to do - its so frustrating!

[DorsetLady PMRGCAuk volunteer in reply to LozzaSandstrom]

You don’t necessarily need to “get bigger”- but you do need to seriously look at your carb intake..others will be along in due course to give more help. Or look at the FAQs -there is info on there about weight management.

[SnazzyD]

Hello, after only 3/4 weeks it is quite possible that you have dropped too fast and even though it is a recognised dose step not everyone can cope with it. Whilst withdrawal symptoms are expected, these usually kick in within a day or so. Given that yours started a week later, it suggests the inflammation has built up again. The steroids don’t get rid of PMR, they are dealing with the inflammation of your autoimmune condition. The idea is to reduce to the level that stops the pain whilst your condition dies down but it’s a slow process. The reduction guide is a start but needs to be tailored to the patient. It may be that a drop by 1mg is enough for you at this early stage. Reducing no more than 10% of your last dose is a rule of thumb that seems to work and your jump was a bit over 16%. You need to have a word with your doc and ask for a slower reduction. Some docs are happy to go with the patient’s requests and some think they need to go down as fast as possible. The ones who specialise in PMR are much more careful.As for the future, remember you are not on this level of dose all the time and trying get rid of it by toughing it out and getting away from steroids never works.

Make sure you watch sure salt intake to avoid fluid retention and eat a low carb diet rich in protein, oils and veg as much as you can will really help with weight and not getting diabetes.

Sit tight, more replies will come I’m sure.

[LozzaSandstrom in reply to SnazzyD]

Thank you thats very helpful I will get onto the doctors this afternoon

[PMRpro Ambassador]

Hi and welcome!

I'd say you haven't given the 15mg - which is the low end of the starting dose range (lowest effective dose in the range 12.5 to 25mg) - long enough to really clear out the existing inflammation so you have a very small range before there is enough to feel symptoms. Plus, not everyone can manage 2.5mg at a time.

Why are they always in such a HURRY???

And you really need to discuss the long term use of ibuprofen for the other pain. It isn't advised to take NSAIDs and pred together - they both can irritate the stomach and cause bleeding.

If weight is your worry - cut your carbs drastically. It really does help keep pred-associated weight gain down, lots of us can vouch for that. If you are very big - you will probably need a bit more pred anyway.

This site is really useful:

dietdoctor.com/low-carb/foods

[LozzaSandstrom in reply to PMRpro]

Not really big but chunky! Right thank you I will get onto that right away - thank you

[piglette]

Doctors usually try for a reasonable size reduction at the beginning, but delicate flowers like myself are not up to it! You may get a bit of pain in the first day or two due to the steroid withdrawal, but you then should remain much as you were at the beginning, if you don’t you have reduced too much. I found 1mg taper every four weeks over 10mg and then 0.5mg every four weeks under 10mg worked for me. As the others have said ibuprofen and steroids are contra indicative and should not be used together unless absolutely necessary. Have you tried co-codamol? You can buy it OTC. I gave up gluten and simple carbs when I started as I was told that that would stop a moon face. I have become much more aware of nutrition since getting PMR and have become a nutrition bore.

[LozzaSandstrom in reply to piglette]

Right well I will try that - the trouble is and its only stupid but I ordered like 60 kgs flour a month ago to keep me going for. year making bread etc and now I am thinking, wow, no bread and I have bought a years supply of flour ? Small in the scheme of things, maybe I can sell it on - and maybe I can just reduce to a couple of slices a day and avoid the moon face - thank you there are other options out there and you are all right, I have to give more attention to my diet now if I want to be low pain or even, pain free - thank you

[piglette in reply to LozzaSandstrom]

My gosh 60kg of flour, that is nearly a whole me!

[Constance13 in reply to piglette]

It’s quite a bit more than “the whole me”. I have 1 kilo of flour in my cupboard - which is out of date, so I’ll have to bin it!!

[PMRpro Ambassador in reply to Constance13]

If there aren't animalcules in it - it'll be fine ...

[Constance13 in reply to PMRpro]

Coo! Another word to learn!! Don’t think I’ve had it a year though - not sure.

[piglette in reply to PMRpro]

Can’t you eat animalcules, they are full of flour?!

[PMRpro Ambassador in reply to piglette]

AND are only added protein ...

[piglette in reply to PMRpro]

You took the words right out of my mouth!

[piglette in reply to Constance13]

I heard that flour can last up to a year with no problems.

[LozzaSandstrom in reply to piglette]

Thats more than a whole me!! I might take out all the other carbs and keep the bread its a start - I was delighted that last years shorts still fit - I aint thin but I'm not putting on weight yet either so its a start!

[Flivoless]

I was originally put on a 15mg dose but didn't even touch the sides. Increased to 20 and within 3 days all pain was gone and, luckily for me, for the most part has stayed gone throughout my "slow" taper (now at 9). To my my mind dropping from 15 to 12.5 is too bigger step in any case.

[LozzaSandstrom in reply to Flivoless]

Yes thank you for that Flivoless - and how long has it taken you to get to where you are now? May I ask?

[Flivoless in reply to LozzaSandstrom]

Just on a year so far.

[LozzaSandstrom in reply to Flivoless]

I appreciate you replying to me - I see now having read up on it that this is a long job - I have been back on 15mg since Friday and I feel lbetter I also have been sleeping 12 hours again and getting headaches which I see is another effect of PMR - If I have to change my diet to be nearly pain free then thats what I will do = thank you I feel so much better for asking