Think I'm having a flare up

[Jcarling]

Hello there

This is the first time I have posted here, but I have used the site and read the posts for advice for about 3 years. I was diagnosed with PMR 3 years ago. I initially took 20 mg of pred and have been tapering slowly ever since quite successfully. I went down to 15 mg and then slowly by 1/2 mg I am now down to 2.5 mg. when I felt unwell I tended to stick for a couple of months at the dose and then started the reduction again. So now my dilemma is now that I'm on 2.5mg and have been for the last 3 weeks I seem to be having a flare up. I thought it might be something else and have seen a physio but I don't think the deep massage given by the physio is helping (only causing more pain!). I have pain in my arm muscles, shoulders and hands and neck. Initially it was on one side only which is why I sought the help of the physio and didn't think it was the PMR, but over the last couple of days the same symptoms have appeared on the other side of my body. So I think it maybe the PMR. I have not had a blood test for a few months so I will get one this week to see if there is any increase in inflammation (sed rate at 2 for last 2 years). I wonder if anyone could advise me on what dosage to increase the pred to to see if it alleviates the pain and confirms that this is indeed a flare up. Thanks a million.

[DorsetLady PMRGCAuk volunteer]

The general census of opinion seems to be 5mg above the dose you last felt okay at. But it seems to vary depending on how quickly you realise what’s happening and catch it. So in your case it may have been 3mg or even 3.5mg.

So how about trying 8mg, maybe 7.5mg would be enough and it doesn’t sound quite so bad!

Stay for at least a week, perhaps a bit longer to clear things out. You should then be able to drop back down relatively easily in say 1mg or 0.5mg steps to around 4mg. That’s slightly higher than now I know, but maybe that’s what you need.

The last thing you want is to rush things at this stage, you’ve done so well so far.

Good luck.

[Jcarling in reply to DorsetLady]

Thanks so much for your advice and prompt reply - will increase as you say and fingers crossed. I think I fell into the trap of thinking it had gone!

[DorsetLady PMRGCAuk volunteer in reply to Jcarling]

Wishful thinking maybe. Plus you’ve never really 100% sure until you’ve been off Pred for a good few months and NO returning symptoms.

[piglette in reply to Jcarling]

The same thing happened to me not so long ago. I think I fell into a state of false security when I got down to 3mg and everything was fine. I then had pains like you, in the end I had to go up to 10mg although adding 5mg is the usual increase. My osteopath was wonderful as I had become very tense due to the pain and she has been slowly ironing me out.

[Jcarling in reply to piglette]

Thanks for your support and helpful words.

[PMRpro Ambassador]

Was about to say exactly same as DL - many doctors feel adding 5mg to the dose where the flare appeared for up to a week is often enough. Then you can drop back to just above that dose - obviously it was slightly too low. The sooner you deal with it the less extra is needed.

You aren't heading relentlessly for zero - you are looking for the lowest dose that manages the inflammation and for you that sounds to be 3mg. A very low dose that isn't going to cause problems however long you need it - so I would stick there a few months before trying again.

I actually found an article the other day that admitted that PMR can appear just on one side - both initially and in a flare. But leave it long enough and it will spread its attentions to the other side!

[Jcarling in reply to PMRpro]

Thanks so much for your reply and advice. Will increase by 5 mg and see how I go!

[MamaBeagle in reply to PMRpro]

Absolutely agree pmrpro. I started on left hip and thigh, back of, I thought it was sciatica for a while, until the other hip succumbed. I've just ended up on 7mg after deciding the hip pain and a very inflamed wrist were not an age thing!

[MamaBeagle in reply to PMRpro]

Absolutely agree pmrpro. I started on left hip and thigh, back of, I thought it was sciatica for a while, until the other hip succumbed. I've just ended up on 7mg after deciding the hip pain and a very inflamed wrist were not an age thing!

[Cuckoonest77 in reply to PMRpro]

Same here . I thought it was sciatica as it was only on my right hip and thigh but now it’s on both sides plus my shoulders which haven’t bothered me for sometime. I had been decreasing preds since May...but was only on 7mg so started again yesterday on 10. It worries me as I’ve been dealing with this since 2013_

[SheffieldJane]

I would do exactly as our two experts have advised. Good luck! You’ve done wonderfully well. I hope fast action will nip this flare in the bud. Blood tests don’t consistently guide us in my experience but symptoms certainly do. Do you know what triggered this? Or did it just creep up on you?

[Jcarling in reply to SheffieldJane]

Thanks for your encouragement. I reduced my dosage to 2.5 and it just crept up after about 2 weeks. It started with a very sore hand so I didn't think it was a flare at first. It then got worse and spread up my arm to my bicep and then the shoulder particularly when lifting my arm laterally. The last few days the symptoms have appeared in my other arm and shoulder and also I've started to feel a lethargy and a lack of energy and a little poorly. I am going to increase my pred dose to see if this alleviates the symptoms.

I will keep the site updated with my progress.

Cheers!

[MamaBeagle in reply to Jcarling]

I should have read your comment here jcarling, before I posted one further up the line. I've just had a similar experience, hips and right wrist going up the arm.... I increased from 2mg to 5 then 6 did each for a week with slight improvement. Then upped to 7 and after nearly a week things have settled. So the 5 above advice worked for me. Hope it does for you. Good luck.

[Jcarling in reply to MamaBeagle]

Thanks for the encouragement!

[HeronNS]

I was in a similar situation last year, and attempts to recover with smaller increases didn't work until I bit the bullet and added the 5 mg. I only needed that highest addition for a few days, but I didn't drop down all at once afterwards but went in fairly rapid steps to a point about 2 mg above where I'd been, then DSNS after that. It's a year later and I'm still not back to the lowest dose I'd achieved last year, so I think I'd exceeded my best lowest dose by all of .5 mg - the next couple of weeks will prove it one way or another as I am having problems with most recent taper. Not going to let it get out of hand again this time, though!

[Jcarling in reply to HeronNS]

Good luck with it. I'm going to increase by 5mg and hope this helps. How long did you stay on the 5mf increase?

[Jcarling in reply to Jcarling]

I mean 5mg!

[HeronNS in reply to Jcarling]

Only a few days taking the extra 5 mg. Four I think, so I was taking 7. Then similar few days until I was down to 4, then reverted to dead slow taper from 4 to 3.5 to 3 and so forth since then very slow. Months really to get to and stay at 2 until I felt well enough to be tempted to think I was approaching remission. But tapering to 1.5 has been a bit difficult so it's a waiting game to see it it's going to work, or back to 2.

I should add that before I went up by 5 mg I had been messing around with trying 3 mg, 4 mg, for a couple of months, and not doing well at all. It was silly to waste that time, I should have gone up when things started going pear shaped, as a locum told me I should.