A flare ,people mentioned allot.

[Ronzy]

What is it how would you describe a flare ,because I don’t think it would wash with this doctor of mine 😵‍💫😩

[DorsetLady PMRGCAuk volunteer]

Have a look at this - healthunlocked.com/pmrgcauk...

..but be aware not everybody’s flare is exactly the same, but usually it’s a return of original symptoms..

[HeronNS]

Basically a flare is return of the original PMR symptoms. It can be confused with "pred withdrawal" when symptoms occur soon after starting a taper. Pred withdrawal begins soon after the taper but improves over a few days. We encourage slow taper plans as this reduces the severity of the withdrawal, or even avoids it altogether. A flare tends to start building up over time and if not checked through increased pred dosage can get as bad as pre-treatment symptoms. It can be caused by tapering to too low a dosage for the level of PMR you are experiencing, and again this is why a slow taper is encouraged because it's a lot easier to pinpoint your "lowest best dose" if you are tapering in tiny steps. Eventually one can pick up the tapering again as PMR lessens. Or a flare can be caused by an increase in disease activity, and again an increse in dose is required, although hopefully not as much as initial starting dose. (I had a flare of this kind last year and although my initial starting dose had been 15 mg for a month, the flare only needed 10 mg for a couple of days, and then a rapid taper to a lower dose, although still higher than I'd been on before the flare.)

[SheffieldJane]

Basically your symptoms start to return in a big way. Something I think I am experiencing right now having had a 4 week break from Actemra. My 7 mgs of Pred is not holding my symptoms. Decision time. I am sorry that your doctor is not more sympathetic. A flare is a well known event in the PMR journey. It usually arises from overdoing things and under- dosing with Pred or reducing too fast with too big a drop in dose at a time. For the full version follow DorsetLady’s link. I only just noticed it.

[HeronNS]

My original symptoms were considered osteoarthritis. When I had the flare last year I dismissed the increased symptoms as - osteoarthritis! Not until I bit the bullet and took a larger dose of pred did the symptoms diminish as quickly as they had the first time. I have had minor increases in symptoms in the past, which I would not really call a flare because they were dealt with by slowing or pausing the pred taper, or going back up a tiny bit. What happened last year was unprecedented, including a higher CRP than I think I've ever had. Yet in retrospect I should have known better as indeed the symptoms were similar to the worst ones I'd experienced in 2015 - but I'd forgotten!

[HeronNS]

It's so nice to be able to say, "last year"!

[Ronzy]

You say you increased your dose ,not they 😱 nice

[Africschoice]

Funny this only just got diagnosed after 4 months of incredible pain, unable to lift my arms to hold a cup unable to walk without a rolling gait and not more than a couple of steps, one day on pred and I thought I was cured, absolutely miraculous but after 3 days I feel like there is a tight band around my arms and chest and I find I'm shallow breathing to ease the pain. I can't lay on my back it hurts too much. Dr says it's a side effect of taking Pred? I asked if he could increase the dose up to 20mg but he said that could cause uncontrollable panic attacks...... what the hell is happening.... I'm totally fatigued with solid muscles by 4pm and lots of pain but Dr won't see me for another 2 weeks absolutely fed up

[HeronNS in reply to Africschoice]

Sounds like you might have been acting as though you were completely cured! Take it easier. You've got a serious systemic disease and have to do your part, along with the pred, to keep yourself heading in the right direction. You wouldn't expect to be back to normal after a bad case of flu or be able to do everything you used to if you had a broken limb. PMR has to be looked at the same way, at least in early days, tempting though it is to believe everything is back to normal.

It does get better, but - pacing is the key! Also, some of the pain you are experiencing could be very tense muscles. It's astonishing how much pain, and referred pain, we can get with spasmed muscles. if you can't get to see a physiotherapist you could try some relaxing techniques. Perhaps someone reading this thread will have suggestions? I can only suggest warmth and possibly massage, although I've never personally been a massage fan. My physiotherapist said my back muscles were like bricks and I had no idea! She used dry needling to reset the electrical signals in my back muscles.

[Nextoneplease in reply to Africschoice]

Hi Africschoice, I agree with Heron. As you’ve been in such pain, your muscles will have tensed up. Also, now that the pain has been relieved by pred, you’ve probably used those tense muscles more. So you need to take it easy, stretch, take warm baths/ showers, really pamper those muscles as best you can.

Also do bear in mind that the prednisolone only reduces the inflammation that you have with PMR, it doesn’t cure it as such. You will eventually be able to reduce your dose, and most people do go into remission in time…..but it does take time.

If you’re new to this forum, perhaps have a read of the pinned posts and FAQs to the right of your screen…..then feel free to ask about anything concerning you, or just talk about how you feel.

Welcome 😊x

[Africschoice in reply to Nextoneplease]

Thanks for everything it means a lot to hear from you guys. Its all a massive learning curve 💞

[singingloud]

My original symptoms began with stiffness of the hips and then moved to my shoulders. The pain increased to the point of crying in my sleep and waking every hour. Plus not being able to lift my arms or sit for any length of time.My flare right now is return of pain in shoulders and burning across my back and up my neck. Still not at the level before prednisone but I never want to get to that point again. I’m now taking 14 mg for hopefully five days and then 10 mg for ten days before returning to 9mg where I was comfortable. Hopefully this will calm things down before I start the slow taper again but then maybe 9mg is my magic number for a while.

The 14mg yesterday was so helpful and I felt like myself again!

[Telian]

Hi Ronzy, hope your Doctor isn’t as unresponsive as you’re thinking! Go armed with the knowledge you have about your body and make sure they understand you not the other way round. In simple terms there are withdrawal symptoms and flares - both similar except for the timings of when they appear. Withdrawal symptoms (the same as your original pre-diagnosis symptoms) usually start on the day you begin a taper and last for a few days before gradually disappearing. They can be painful and I take paracetamol to ease the pain- no painkillers take them off completely only the correct dose of pred for you which as already said, about withdrawals, will usually ease after a few days of tapering.

A flare can start any other time for no apparent reason. Most likely because your dose is too low for the underlying inflammation (why is not always immediately apparent) in this instance you can go back to the last dose you were pain free on and stay there until all symptoms have completely settled before starting a new low dose taper. Listen to your body and if it hurts it needs attention. Also you might have overdone it so think what you might have been doing different. If you have over exerted yourself a short increase of pred can help and you can go straight back to your previous dose once the symptoms have eased. We’re all individual and what works for one doesn’t necessarily for another but the theory is the same. I’ve suffered withdrawals throughout my time with GCA and PMR (since 2014) and I know what works for me. Best wishes.

[Ronzy in reply to Telian]

Thanks for that Talian. Sondes good advice to me , one thing also off putting is she is typing all the time ,I can see she doesn’t really want to listen much to what I am saying 😢 If I don’t get any satisfaction,I will make it very clear I am not happy nor satisfied, and say I wish to see another doctor 😤.

Don’t feel sympathy card will get me anywhere with this doctor.

🤷🏽‍♂️🥺

[Telian in reply to Ronzy]

Mmm - that is off putting - think you may be right with your right to reply virtually none existent. Go within your gut and do what you feel’s right on the day. Do you have a good relationship with your GP as I’m presuming you’ll need their help to re-refer? Hope you’re able to deal with this with the least stress on yourself. Let us know how you get on. 🌺