Definitely a flare. Stiffness now making itself known. Increase dose to where and for how long?

[Ebiker]

Morning all. Those of you who replied to my post 27th will have the background.It did not seem to be a flare but after 3 days at 9mg the bilateral stiffness is there. Also feeling my knees. The dead head and fatigue has lessened a lot in last few days.

I feel I am back to where I was 2 years ago!

I increased to 11.5 yesterday and had esr test. However will not get result till next week and we know it is not necessarily a guide.

As the two weeks on 12mg did not get rid of stiffnes completely I should have probably waited longer and not dropped to 9mg. My guess is to go to 12.5mg daily. Maybe 13mg? Hate the thought but has to be done!

I cannot remember exactly how long I stayed on higher dose last time nor stages of drops.

Your guidance appreciated.

[PMRpro Ambassador]

Add 5mg to the dose where you flared for up to 7-10 days before dropping back to the dose you were last good at. 2 weeks at any dose is rarely long enough to be sure it is still enough but they are all in such a hurry these days,

[Ebiker in reply to PMRpro]

Ok. Thanks PMRpro. Let me see if I understand this correctly. That is the route I tried 3 weeks ago when I flared we believe at 6mg. I was fine on 6.5mg. I increased to 11/12mg and it lessened stiffness ( which wasn't too bad) but I tried to drop after 2 weeks to 9mg. You are saying 2 weeks was not long enough and I should now go back to that dose of 12mg and see what happens.

[PMRpro Ambassador in reply to Ebiker]

Then that suggests that this isn't a flare that is due to overshooting your optimum dose, If you had been OK at 6.5mg, dropping back to 9mg now should be plenty, There are 2 reasons for flares, either way the dose of pred at the time is no longer enough. The more common is when you are reducing the dose of pred and overshoot but the disease activity remains the same,

The other case is where the disease activity increases for some reason - and the previously adequate dose of pred is now no longer enough. Then you have to go back to a dose that controls the symptoms fairly well and start the process over again - waiting until the symptoms are really well managed and then taper slowly again.

What had you been doing before the flare appeared? Had you been ill?

[Dochaz in reply to PMRpro]

@PMRpro, when you say "a dose that controls the symptoms fairly well", how do you judge "fairly well"? Is some stiffness, but no real impact on mobility, all right? Lack of get-up-and-go, but still able to walk to the shops (10 mn) and back with a light load? Is that state of affairs reasonable to keep going on the dose I am at now (flared at 6.5 mg, up to 11 mg for 7 days, now on 8 mg for the last 7 days) and blood markers stabilised when there had been a (very slight) upward trend? I really don't want to climb the Pred ladder back upwards again!

[PMRpro Ambassador in reply to Dochaz]

12mg was obviously there or therabout - but you have to be patient. Either you take more pred and get a faster result or you take less pred and it takes a bit longer to get symptoms under control.

[Ebiker in reply to PMRpro]

I had a pe in January but although I got over that there were ongoing health issues from meds, gerd etc and was hit with fatigue end of May.Tests revealed low B12 and Vit D. All these sorted and did a successful drop August, September, to 6.5mg.

As I wrote in last post I think the problems started in Oct when I had the covid booster. I have had upsets with the pmr more than once after jabs. I was doing really well by mid Oct and back to feeling 'normal'.

[PMRpro Ambassador in reply to Ebiker]

Ah - now you're talking!!! I had a PMR flare last year with the second Moderna jab but that was nothing to the response to this new bivalent vaccine which I was given in late November! It woke up my a/fib which has always been worse with a PMR flare. I'm on Actemra so the PMR symptoms weren't too bad, other than the fatigue, but I did have to add a bit more pred to settle the a/fib.

There was a whole thread about the jab and flares.

[Ebiker in reply to PMRpro]

Yes you mentioned your reaction in a one of my previous posts. I am convinced that the bivalent vaccine is responsible for my current problems. I believe the strange head and no energy are a result of the vaccine. It can apparently be 3 months before these side effects subside.If the jab has 'activated' the pmr again I am right to stay on this dose of 12.5mg till the stiffness goes and I feel on top again?

[Ebiker in reply to PMRpro]

Should read 12 or 12.5mg

[PMRpro Ambassador in reply to Ebiker]

Probably but you may have to try a lower dose now and again to find out if it is gone.

[Freya32]

You need enough to be free from pain so that you can sleep and live .The body knows best.

Why did you need to drop if you were ok on what you were taking?

Maybe you just were not ready to try less pred.

We are each unique and have our own set point levels.

What suits one may not be right for another.

Go back to what you were taking that made you comfortable and stay there a while and then gradually drop only very slightly a nd seehow your body reacts.

I am new to all this. But have read all i can and it seems what fits one person may need a little adjustment to fit another.