Can you have a flare when on 1.5mg pred?

[Crochetgirl65_]

After eight years of pred I am finally down to 1.5mg per day using dead slow method. My energy levels are starting to improve which means i am doing more but i am starting to experience pain again. For instance a little ironing or cleaning means pain in hips, arms and shoulders is pretty bad and has not happened before and things like knitting for an hour gives me pain in my arms, fingers and shoulders. Not sure if this is because of the low dose pred ie 'flare' or has the pred has been masking this, is it lack of muscle and I need to exercise more?

[SheffieldJane]

I wonder if these pains are being caused by your adrenal function struggling. It can take a full year for Adrenals to recover following long term steroid use. These pains can mimic the conditions we have suffered from. Why don’t you request a morning cortisol test or short Synacthen test from your doctor who can refer you to Endocrinology Dept., to see if this is the trouble. Tiny doses of Pred do more that we think. The other possibility is a building flare that would need a slightly higher dose than you are on now.

[SnazzyD]

I’d put my money on a combination of low adrenal function, deconditoning and possibly unhappy tendons. I found that the big muscles can just about get through but the little muscles and tendons that stabilise side to side motions, especially when carrying or applying pressure scream. Low adrenal function can make one feel generally achey too. I’ve had to be really careful due to delayed onset muscle strain and the build up to fitness has been necessarily very slow.

[Crochetgirl65_ in reply to SnazzyD]

It is odd you should say that about exercise. For a lot of different reasons I have done very little for months. I was fine until I started a very very gentle beginners yoga class! Looks like I am going back to 2mg a day so perhaps I should see this as an opportunity to find some excercise that will help me get stronger before I start reducing again. Any thoughts?

[SnazzyD in reply to Crochetgirl65_]

I have found that the strengthening bit is a long term project and certainly not like before diagnosis when I could do a blast of exercise to get my self back up if I’d got out of condition. If you have unhappy tendons or joints you need to be very careful, well I did. My Achilles took over 18 months and my upper body is still flakey 20 months after stopping Pred. So, getting fit before reducing might be the wrong way round. The big however is that we are all different so you need to find your own way through so listen to your body, no heavy measures and keep an open mind.

[DorsetLady PMRGCAuk volunteer]

In answer to your question, yes you can flare at 1.5mg - if your PMR is still still active you can flare at any level.

As stated, symptoms could be combination of things…..but an extra 1mg or even 0.5mg might answer question.

If that doesn’t help, then look at adrenals and/or general lack of muscle condition.

[Crochetgirl65_ in reply to DorsetLady]

Looks like I needed more pred 😞. I thought I was managing steroid withdrawal but I guess if the higher dose I took yesterday made the pain go away the PMR is still there?

[DorsetLady PMRGCAuk volunteer in reply to Crochetgirl65_]

Quite likely…how much did you take?

[Crochetgirl65_ in reply to DorsetLady]

I took a 2.5 dose rather than 1.5/2 . I was on week three of 1.5/1.5/2

[DorsetLady PMRGCAuk volunteer in reply to Crochetgirl65_]

So not too big an increase then - so that probably gives you your answer. So maybe stick at slight higher dose for a few weeks.

[PMRpro Ambassador]

You can have a flare at ANY dose! And since you are tapering looking for the lowest effective dose, the lower you get, the closer you are to that dose. In your place I'd be assuming it was probably I was now just slightly too low to manage the inflammation well at this stage. And all the factors mentioned may be playing a role.

If it were me, I'd go back to the previous dose where you were OK for now, and do some VERY gentle conditioning exercise. In one sense you want to exercise more but it MUST be at a level that isn't going to overtire your muscles so they get trained without any DOMS (delayed onset muscle soreness). That means lighter weights/intensity and intitially very short duration - building up VERY slowly.

[Crochetgirl65_ in reply to PMRpro]

Thanks for your advice. Yesterday I took a 2.5 dose and within hours the pain had gone. Does this mean the PMR is still there or could it be adrenal problems? I guess the plan now is to go back to 2mg which was my last comfortable dose. How long do you think before I can start reducing again?

[PMRpro Ambassador in reply to Crochetgirl65_]

Could be either - really difficult to say at this level. However, I just read a reply from someone whose rheumy told them he'd be happy for them to stay at 3mg for life if necessary and Prof Dasgupta did keep people at 2-3mg long term if required. Just take it mega slowly from now and see how it goes. Rod Hughes likes to keep patients at 5mg for up to 9 months as it is low enough to encourage the return of adrenal function and he finds it makes the rest easier. You have got to half that - I'd be in no hurry.

You could ask your GP to do a basal cortisol test - the cortisol level in a blood sample taken between 9am and 1pm without having taken pred in the previous 24 hours. It gives a good indication of where adrenal function is currently: below 100 is adrenal insufficiency, above 450 is normal. Anything between needs more investigation but the higher it is when you are still on pred better and a sign they are doing something. You won't get a really reliable result until you are off altogether but below 3mg it is increasingly meaningful.

[Crochetgirl65_ in reply to PMRpro]

Thank you. I will see if my doctor will give me a test. She can be a bit aggressive if I go in with information from this forum. This has sadly meant that I haven't involved her in this particular health issue for sometime now.

[PMRpro Ambassador in reply to Crochetgirl65_]

Oh dear - insecure is she? Can you see someone else in the practice?

[Crochetgirl65_ in reply to PMRpro]

Yes, it is worth giving it a go isn't it?

[borednow in reply to Crochetgirl65_]

My GP once warned me off this forum. That was 5 years ago - thank goodness I didn't take any notice. Just don't mention the forum - I talk vaguely about a friend!!

[Crochetgirl65_ in reply to borednow]

Sounds like a good idea! Thank you 😊