another drop: Hi all, hope you are all doing good... - PMRGCAuk

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another drop

Sue8 profile image
Sue8
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Hi all, hope you are all doing good.

Yesterday I dropped another 1mg so now on 18mg. I am doing 1mg every 2 weeks.

I have got up with very stiff arms and knees this morning but I don't think it is the drop of 1mg. I think it is more to do with the walking the dogs every day which is new to me. I am enjoying it though as it is half hour with my hubby, just us 2 and the dogs. And it WILL do me good in the long run :)

I had bloods done yesterday which included the usual CRP but also the one you all talk about, I think it's ESR or ERS. My doc says it is better for the markers for PMR than the CRP if that makes sense to you. These were all done as I am off next Tues to see the rheumy for the first time and he will have th eresults so won't waste time doing it all when there. I have been told to expect bad news on my hb1ac though as the pred is raising my blood glucose, so will see.

On a different note, I have done 2 of the tote bags so that's £6 already going to PMRGCAuk.

I am now being asked for T-shirts so I am in the stage of sourcing them at a good price but at the moment reluctant to bulk buy as don't want to be stuck with lots of t-shirts.

All this from just doing bags for my grandkids for xmas :) It then went on to Santa sacks and now charity bags, it's great and I am enjoying doing them.

Keep smiling :)

Sue

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Sue8
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Sue

Well down on reducing your dosage - hope it works out. I am stuck on 15mg but going to rheumy on 31 Oct (if the broomstick is working). Congratulations on the tote bags and I think the T shirts are a good idea (one source of T shirt is polo-shirts.co.uk - I can recommend them). Take care, rest often but keep your mind occupied as well. Give the dogs an extra treat from me.

Margaret

Sue8 profile image
Sue8 in reply to

Thank you x

Pipistrelle profile image
Pipistrelle

Good luck with the drop!

It is actually the other way around -- CRP is a lot more reliable than ESR (SED rate). And neither are particularly useful for many people with PMR -- some with PMR have a low or zero on these tests but still have it. For those who do have elevated ESR and CRP, they are useful for tracking improvements. All for frustrating at times as there's no 'normal'!

Almsot anyone over about 40 will have some elevation on ESR simply because of age. I know there's a score you can add in for every x years of age -- someone else might know what it is? :) For my age (early 50s) it means an ESR of up around 10ish could be normal. I have bad knees for example and some repetitive strain problems so this could be reflected in my ESR and nothing to do with PMR.

It is normal to have increased pain for a couple of weeks after a drop. :) Mine actually typically lasted longer than 'just' a week or two (which is what some doctors suggest) but I learned it would indeed settle before too long when I was on higher doses.

If you continue to have a lot of trouble reducing, you probably want to go back and talk through that with your rheumatologist. The UK and also the newer US guidelines indicate that when the condition isn't responding fairly readily to steroids then another diagnosis needs to be explored. Usually the high dosage drops are the easiest.

Pipistrelle profile image
Pipistrelle

That should be all SO frustrating... :D

bluejaygirl profile image
bluejaygirl

I am on 10 mg but this morning started on 15 mg. just tooooo much pain and weakness. see rheumy end of month

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