Reduction, should I tough it out?

[Pandora2]

I was fine until I reduced my pred 4 days ago from 5.5 to 5mg. However the effects of the reduction hit me almost immediately. At first just weak / listless, now the pain is creeping in. Do I tough it out a bit longer or up my dose again ? X

[DorsetLady PMRGCAuk volunteer]

If it were steroid withdrawal would have expected things to have improved by day 4…so might be sensible to go back to 5.5mg, give it a bit longer before you try again.

You may well find that 5mg is your lowest dose for the moment….so sit there for a while.

When you feel ready to reduce again, maybe use a slower taper method - see here -

healthunlocked.com/pmrgcauk...

[SnazzyD]

Sounds like your adrenal function isn’t yet ready to make up that extra 0.5mg loss. The pains may be a side effect of this (I felt fluey achey) but it may be that 5.5mg wasn’t quite enough for your current level of inflammation and it’s building up. At these dose levels it can be difficult to tell which. At this stage in the game I couldn’t do a sudden drop from one day old dose to the next, clunk, new dose. You may also find now that until your adrenal function peps up a bit, you will have to take things more easily and not stress your body so much, even good things. If it were me id go back to 5.5mg and reduce using a slower plan that introduces the new dose, sneaking it in rather than whipping that 0.5mg away like the table cloth trick. See this link for plans such as the Dead Slow nearly Stop.healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

It could be a mix - the body struggling to cope with that bit less in terms of adrenal function but the fact it is worsening suggests it is simply too little for the PMR and you were already on a knife-edge.

Has this happened at a similar dose before? If so - that is often a sign you have reached your destination: the lowest effective dose. It doesn't mean you won't get lower, just not yet. And I'm sure using one of the slowed taper approaches would help.

And I'm sure piglette will say don't try to tough it out - PMR always wins!

[Pandora2 in reply to PMRpro]

Thank you so much for your swift replies , DL, Snazzy &PMR pro…… I haven’t really been here before as my Dr cut me off twice after HIS six week programme of treatment, both ending at 5mg. No one seems to be pushing me to reduce at the moment but in the past I’ve had phone calls instructing me to reduce, so suppose I’m conscious of their pushing me.I have plenty of Pred for the moment ( supplied by a locum I was fortunate enough to see on my last surgery visit).

By the way my last bloods were slightly elevated 6 weeks ago .

Thanks again to the GOLDEN GIRLS. X

[DorsetLady PMRGCAuk volunteer in reply to Pandora2]

If your bloods were elevated last time (albeit slightly) might be worth getting them checked again. It might have just been a a blip, but does need another test to make sure not rising..

[Pandora2 in reply to DorsetLady]

Thank you DL. I will telephone now. X

[Pandora2 in reply to DorsetLady]

Appointment made, apparently should have been invited for 2nd May but wasn’t.

[PMRpro Ambassador in reply to Pandora2]

I wonder if showing this to your GP might get them to understand that PMR isn't an illness you treat for 6 weeks and stop. It is a chronic rheumatic condition that lasts in excess of 2 years, frequently a lot in excess!

rcpe.ac.uk/sites/default/fi...

and maybe the 2015 Recommendations for the management of PMR

rheumatology.org/Portals/0/...

[Pandora2 in reply to PMRpro]

Thank you PMRpro …. I’m trying to avoid seeing that particular GP as I’m sure you will appreciate he doesn’t inspire me with confidence. However if I have to see him again I will certainly have words to say on the subject. Not easy to chat with him though , him having a very thick Indian accent plus mask.

[PMRpro Ambassador in reply to Pandora2]

Ah - answers most questions that!!!!! But if WE were to ask for a translation service it would be totally un-PC wouldn't it.

[Pandora2 in reply to PMRpro]

I rather think it would. X

[piglette]

If you have pain don’t whatever you do try and tough it out, the PMR always wins and trying to carry on is just bad news.

[Pandora2 in reply to piglette]

Thank you Piglette…….I’ve already upped my dose back to 5.5 and also been for bloods drawn this afternoon.Very grateful for your input. X

[Prof99]

It is so easy for Doctors and Specialists to give out Text Book advice, expecting a drop of X to work for everyone, every 3 weeks. I got fed up with being told what to do by someone who wasn't living with the pain and discomfort of following their 'one size fits all' advice. This forum made me realize that we need to listen to our own bodies and not blindly follow set patterns prescribed by those who do not have to live with the pain. I now do really slow tapers, and if they don't work for me I go back to a level where I am comfortable then try again at a time that suits me. Don't be afraid to question doctors and answer back - they only know what MIGHT work for you - not what will definitely work for you. Good Luck.

[Pandora2 in reply to Prof99]

Thank you Prof99 . I have only been visiting this forum for about 3 months but have learned more in that time than the previous 6 months of struggling through with GPs. As you say mostly they assume one size fits all to the detriment of most patients. I don’t consult my doctors now for advice, I consult the very knowledgeable ladies on this forum, and , bless them, I get answers to my problems almost immediately and mostly in triplicate. They have suffered with this condition themselves so have a head start on my GPS. X