Is this a flare

[Choosepink]

I have been on steriods for 9 years , I have had difficulty getting down I am now. on 2 and a half , had a blood test 2 months ago and levels were okay , but the problem I have is stiffness in hips back and legs especially after sitting , I am 77 years old , any thoughts

[DorsetLady PMRGCAuk volunteer]

Certainly sounds as if it might be, unless you have done something else that could be causing it.

Might be worth getting your bloods tested again -a lot can happen within 2 months.

Also consider taking a slightly higher dose - but a bit more detail might steer us in the right direction to give a more relevant response.

[PMRpro Ambassador]

You aren't heading for zero come what may - you are looking for the lowest effective dose and I would suspect you are on the cusp - I wouldn't reduce any further and I would consider going back to 3mg. Prof Dasgupta told us a couple of years ago that he often keeps patients on 2-3mg long term as it reduces the risk of relapses.

The blood markers can lag behind rising inflammation for some time - symptoms always trump blood results.

[Choosepink in reply to PMRpro]

Thank you for reply yes doc did say 2 and half would be what your body would produce normally and that I would have to stay on that dose for good , I think I will take your advise and up the dose to 3 and see if there is any improvement on that , I have been doing some gardening and all winter I didn't do any so it could be that hasn't helped , but even walking at the moment I am finding hard and we are going abroad in two weeks time and I am dreading the airport ,

[PMRpro Ambassador in reply to Choosepink]

Book airport assistance - it makes a massive difference. Nor is there any point in ruining a holiday for the sake of a tiny bit more pred!

Your doctor doesn't KNOW you will be stuck on 2.5 for life. Many people do get off pred altogether but it is more often the PMR that deals the cards, not the adrenal function which will usually come back if you go slowly enough.

[SheffieldJane in reply to Choosepink]

I would take some evidence of your disabilities in order to request assistance. There seems to be some resentful / suspicious feelings ( especially when you get priority boarding) around, amongst the public that may spread to staff, due to the

shambles in some airports/airlines and I am wondering if this will lead to requests for proof. I am going to pre-empt this and take one of my Rheumatologist’s great summaries. This was in my Apple news feed today and of course we tend to look well.

[SnazzyD]

Just a thought, have you had a vitamin D blood test lately?

[Choosepink in reply to SnazzyD]

Would that have been done with a routine blood test which I have every 12 months , otherwise no . Thank you for your reply

[SnazzyD in reply to Choosepink]

Not necessarily. Not all docs think to check even though it affects one’s constitution, aches and pains and bone health. My Rheumy never checked mine; it was up to me to ask. I was found to be low and interestingly although I’ve been supplementing 400iu a day I was not quite high enough to be good when I was tested recently.

[PMRpro Ambassador in reply to SnazzyD]

I need 4000 IU to keep mine stable ...

[SnazzyD in reply to PMRpro]

I do find high doses make me feel nauseated. 800iu is my limit.

[PMRnewbie2017]

I'm only 64 and like you am stiff if I've been sitting for a while. I've also considered if it's due to PMR. A short duration increase in Pred did nothing but a pain killer does. Sometimes the joints in my hands are sore too which I put down to arthritis. I'll discuss all this when I have a phone consult with my Rheumy in July. I've asked several friends if they feel stiff at any time after sitting or when they get up in the morning. It's a unanimous yes with the comment that it's part of getting older!! I find yoga and stretches combined with daily walks helps. Stretching of the quads, the muscles which run down the front of the thigh, is very helpful because they do tighten and pull on the hips. If you can look at YouTube videos on line you will find stretches. It may help you too.

[Viv54 in reply to PMRnewbie2017]

Yes, I follow a You tube video, I do gentle stretching exercises with stretch bands ,it helps so much, but you have to be careful.

[judyb100]

Your situation sounds so familiar! I'm 79 years old and have been on steroids for about 6 years. I've just tapered from 4 mg of pred to 3.5 mg. My hips are also stiff after sitting and at other unpredictable times (not every day). The stiffness is mild; nothing like the extreme stiffness when I first came down with PMR. My bloodwork is normal and has always been except for the first few months of PMR.

When I've traveled in the past, I've taken a little more pred than usual. Not sure if it was necessary, but it seemed to work. Assistance at the airport certainly sounds like a good idea.

I wish there were some definite way to know if I were having a mild flare or if my body just isn't quite used to 3.5 mg yet or if this stiffness is partially from old age. Or if it's because I had to stop going to the YMCA for senior exercise classes during the long Covid era. It seems that these are questions that no doctor can answer.