preds down but flare ups again

[Margaret1951]

hi all, I have not been on for a while so my apologies, once again I am down to 2 mg and hence flare up again 😭 every joint and muscle are back. When I was on 2.5mg I wasn’t to bad for a month on that dose, every time I try 2mg flare up starts and agony. 13 years this year now from 60mg to 2, am I ever going to come lower do you think ? or am I destined for life on preds. 73 in April and osteopenia in spine on X-ray and arthritis caused by preds my Doctor told me, they damage the bones he said and now I have moderate stenosis in my aorta, I have not yet informed my Doctor but should I ask for a Synacthen test to see if my adrenals will recover.

🙏🙏🙏🙏

[piglette]

There is no harm in asking your doctor for a Synacthen test.

[Margaret1951 in reply to piglette]

🤞

[DorsetLady PMRGCAuk volunteer]

Whether you will be on Pred for life remains to be seen, but it’s as low as 2.5mg then I wouldn’t be getting that concerned about it.

Osteopenia doesn’t necessary become osteoporosis - but hopefully you are on supplements [VitD/Calcium] and doing what weight bearing exercises you can.

As for Pred causing osteoarthritis- not sure that strictly true - I had OA long before GCA, and not sure it deteriorated that much whilst on Pred. Too many steroid injections can damage the soft tissue surrounding the joint, which may limit its strength and make the joint feel worse .

[Margaret1951 in reply to DorsetLady]

Thank you, yes he has changed my calcium tablets again, but on a scan in my right shoulder shows definite calcium in the joint. Exercises I had from physio made no difference to the pain and my Doctor told me he can give me a steroid injection in it but I am unsure weather to have it or not as someone told me it’s a painful injection x

[PMRpro Ambassador in reply to Margaret1951]

Into the joint steroid injections MAY be painful AFTER the injection. The injection itself is rarely very painful as it includes lignocaine which is a local anaesthetic. As that wears off it can be painful for a time but usually a dose of painkiller deals with it. But the effect when it works can be a miracle. I recently had an injection into the sacroiliac joint - didn't hurt at all other than for a few seconds as the needle got there it was meant to be.

[Margaret1951 in reply to PMRpro]

Going to book appointment to get it done then , in bed boy does it hurt !!! Comes on when it feels like it 🤬 just took an extra 1mg preds so fingers crossed, thank you

[DorsetLady PMRGCAuk volunteer in reply to Margaret1951]

I never found them painful, and have many, too many over the years - maybe the person who had, didn’t have a very good operator the other end of the syringe !

[Margaret1951 in reply to DorsetLady]

More than likely a trainee 😂😂

[Pixix in reply to Margaret1951]

I’ve had about 15 injections for arthritis, first 6 were in thumbs, then other parts as arthritis spread. I wouldn’t say they were a problem at all, & I wouldn’t let what somebody else say put you off! The relief that the injections bring can be, & sometimes has been for me, really great!

[Margaret1951 in reply to Pixix]

Think I will have it thank you x

[Pixix in reply to Margaret1951]

Good for you, I hope it helps…& isn’t too painful. All injections have a moment or two of pain, but the reward is so great if it helps the problem! S x

[PMRpro Ambassador]

Your body is telling you that you have got to "your dose" - probably 3mg since you only say "not too bad at 2,5mg". PMR lasts as long as it lasts and we having a growing group on here who are in the teens of years. There is a not as common version that lasts for life and the more you try to force off the pred, the harder it gets to manage. Prof Dasgupta has told us he often does keep people on 2-3mg longterm to avoid relapses - a tacit admission from him that this version of PMR is there.

The synacthen test doesn't tell if your adrenals WILL recover, it shows how far they have recovered to date.

I disagree with doctors who put all the blame on pred. Virtually all of us at our age have osteopenia and most people with it have never taken pred. Same applies to OA. I've been on pred for fifteen years - moderate osteopenia when I started pred, spine a bit worse now, hip apparently better!! Some get it, some don't, pred or no pred.

[Margaret1951 in reply to PMRpro]

Thank you so much for your reply, going back to 3mg as can’t handle all this pain anymore. Will stay on that as every time I drop this happens to me , my Doctor allows me to control my preds and has done for a few years now. Thank you again x

[PMRpro Ambassador in reply to Margaret1951]

And that was your body telling you to stop, The more you try to drop, the harder it gets. And often, just giving up the attempts at tapering result in a better quality of life and even allow a VERY slow reduction of 1/2mg over months. Strange but true.

[Margaret1951 in reply to PMRpro]

Have took extra 1mg this morning so 3.5mg today and feel so much better !!!!

[DorsetLady PMRGCAuk volunteer in reply to Margaret1951]

Good…

[PMRpro Ambassador in reply to Margaret1951]

Good!