6month update

[Fozzes]

Since last time I posted anything 6m ago, I have come down to 6mg pred and working a fairly physical job 3 days a week. Understandably each time I drop 1mg I struggle for the first week but January has been the toughest. I’ve seen a rheumatologist this month who tested my blood again CRP is less than 1 and viscosity is 1.68. On paper they seem to think I’m fine and want me off the steroids ASAP. They are even thinking I might not have PMR because I say I’m in pain. I’ve been told if you’re on steroids you shouldn’t have any pain! I think these experts should try reading some of your posts! Tapering starts again tomorrow.......not looking forward to that.

[PMRpro Ambassador]

I do wish I knew where they get the idea that pred equals no pain! I can be on enough pred to manage the PMR and I have no pain from that but if I overdo it then pain develops - not always the same, depends on what sort of pain. It can be Delayed Onset Muscle Soreness because of our delicate muscle status - and pred does nothing for that. Or the soft-tissues around the joints can ache - that possibly is PMR-related but paracetamol works better than pred so there has to be a question mark about that.

Have you tried spreading the drop over a few weeks as in the DSNS approach? That first week was always identified as a problem and we suggested clearing the decks and hibernating for a week. Then came DSNS - and now at 6mg maybe 1/2mg at a time is a better prospect?

But you have done well.

[Fozzes in reply to PMRpro]

Yes, thank you. I’m going to alternate days, 6 on 1st day, 5 on 2nd, back to 6 and then 5 and so on. Works out 1/2 drop over the month. Will see how this goes. Appreciate your response, cheers

[piglette]

It would be nice if some of these experts listened to their patients or even better got PMR themselves!

[Blearyeyed]

If your last taper felt tough you might benefit from waiting another week before starting the next and seeing if you can get your pain in control first.

If you do taper perhaps you could taper by a smaller amount this month to help cope with current issues and maybe the environment and weather affecting his well you can cope with the change.

You might just need to pace a bit more between your physical jobs , or you might be having some Non PMR pain from muscles or nerves too , no longer masked by the higher steroid dose and might find relief by taking Paracetamol at the standard dose each day. Resting more after work physically , warm showers , heat packs or using a joint lotion befire work may also help . Having a multivitamin and mineral supplement and Omega 3 as well as your Vitamin D and Calcium can also reduce Pain of different types. Increasing fluids also helps reduce pain and inflammation internally , even if you aren't thirsty . Magnesium lotion at night can also ease pain .

[Fozzes in reply to Blearyeyed]

Thank you