Meaning of “a flare”

[3daysinjuly]

Does it mean you feel the way you felt before diagnosis and pred? Or just somewhat in pain/stiffness?

[SheffieldJane]

I bet we have all got a slightly different take on this. I have never experienced the severe groin pain that I had upon diagnosis. I think I have recently experienced my first flare. That involved difficulty getting out of the car and climbing into and out of the bath aching legs and some shoulder pain. I went from 6 mgs to 11 mgs and my mobility got better and the pain just about went. I returned in 1 mg drops to 7 mgs hoping that I had done the trick over the course of two weeks. I haven’t felt great but no clearly defined PMR pain, just tired and flu- like symptoms and headache. I have also been in an almost permanent bad mood. My OH flinches when I enter a room. All in all not good or typical probably.

[3daysinjuly in reply to SheffieldJane]

If I ever have to literally pick my leg up with my hands again to get out of a car, I will know it is a major flare. Permanent bad mood, here, too. I used to be able to chat up anyone. Now I can barely speak to people.

[Constance13 in reply to 3daysinjuly]

Speak to yourself in the mirror - you’ll feel so daft you’ll probably laugh. Mood over!

[Daisychain12 in reply to 3daysinjuly]

Me too. I’m queen bitch xxx

[Constance13 in reply to SheffieldJane]

Poor SJ - you are having a difficult time, aren’t you? Is it the PMR causing your bad mood or just things in general? Perhaps we can cheer you up💐💐🍾🍸.

Don’t be too hard on OH, you need him.😂

[SheffieldJane in reply to Constance13]

I think it is changing my Pred dose and a few stressors surrounding me. You are right about OH, I would be lost without him, but he doesn’t really get PMR, he just wants his friend back.

[Constance13 in reply to SheffieldJane]

It’s very difficult for our OHs to understand what we are going through - how could they, the doctors and rheumatologists don’t even understand.

Most do their best, some can’t deal with it, others are our life savers.😀 I have no idea what I would have done without David. He helps round the house, goes shopping (which he hates😏) makes sure I rest, etc etc.

[SheffieldJane in reply to Constance13]

You sound truly blessed Constance. Mine cooks and shops. The bit he doesn’t get is our inability to deal with stress very well.

[Yellowbluebell in reply to SheffieldJane]

I am 8 weeks into pmr and even in that short time my personality has changed and like you my OH would desperately like the old me back even though the old me could still be a bitch!! Oh well he's just going to have to man up!! I have had 33 years of his quirks, it's my turn now!xx

[SheffieldJane in reply to Yellowbluebell]

I can be so irritable - that’s since PMR - I am normally as placid as a grazing cow. Now I am just a cow.

[Hollyseden in reply to SheffieldJane]

Yup I'm definitely more irritable since PMR arrived. I also was a placid cow before. Now my OH reels in horror when I snap at him for something I've just ignored in the good old days pre PMR 😑

[Yellowbluebell in reply to Hollyseden]

I can confess I have never ever been placid and if I was my OH would call in the specialist and have me sectioned!! He is just finding it hard to work out exactly what I might blow up over now that I would have only sworn at before!! Bless himx

[Daisychain12 in reply to SheffieldJane]

👩‍❤️‍💋‍👩

[PMRpro Ambassador in reply to SheffieldJane]

Then take a bit more than 7mg - the stress hasn't gone away so if that is what is doing it, you need more pred to wipe the inflammation up. Being particularly bad tempered and sweary is a sure sign of a flare in disease activity for me...

[SheffieldJane in reply to PMRpro]

I have just shown him your words as my get out of jail free card. You have authority in our house. 👍

[Sandradsn]

I felt I had a flare when I rapidly reduced the pred to 1mg as my GP wanted me off it.I could feel all the pain and stiffness returning and I felt very unwell,I had trouble getting up the stairs. I remember thinking that I felt as ill as when I was first diagnosed.I increased to 5mg and felt much better.

[3daysinjuly in reply to Sandradsn]

So then, a flare can be that bad....like the beginning? I was hoping it never becomes like the beginning again.

[Constance13 in reply to 3daysinjuly]

I’ve had a few flares over the years (6 1/2) but they have never been as bad as before diagnosis. Up the pred for a few days - that should help, and be kind to yourself.

💐💐

[PMRpro Ambassador in reply to 3daysinjuly]

As I've said further on - that's up to you. Ignore it and let the inflammation mount up and you will be back to the start.

[dancersize]

I thought I had a flare when my right shoulder pained me all night, my right hand swelled up and right knee felt like it was in a cast. Increased pred back to 6ml( from 51/2) and added Panadol. Pained eased to next day then knee had a turn at a night of pain. Once that eased I continued with 6ml daily and seem back to as good as it gets. Feeling weary but will continue with 6 until next week when I have a blood test prior to seeing the rheumy. I wonder what the results will be. Seem to be stuck on 6 but plan to use the DSNS to try again for 51/2ml.

[Janstr]

When I had a flare the pain in my calf & thigh muscles came back, but nothing like the original PMR pain. I was having weekly CRP blood tests at the time, & my CRP also increased.

[Angiejnz]

Same as others, my 'flares' (not to be confused with my 70's party jeans) are a nasty reminder that I still have the inflammation problem of pmr but nothing like the crushing pain at diagnosis. I wish the flares came with an email so we don't have to work out what's going on or whether we have developed some other horrible syndrome.

[Yellowbluebell in reply to Angiejnz]

My problem is trying to work out what is caused by pmr and what isn't.

[3daysinjuly in reply to Yellowbluebell]

That’s a good point. At these ages of ours, surely not all pains are from PMR. I have a herniated disc and 2 torn meniscus in my knee. But since pred doesn’t discriminate.....

[Telian]

A flare is symptoms that come on out of the blue ie you haven’t reduced recently. The symptoms can be some, not all, of the original prediagnosis symptoms. If you’re reducing and get symptoms on that day they are withdrawals, quite normal, and usually go after a few days. Both can be reminiscent of prediagnosis symptoms, but again might not be exactly the same. With GCA, I have both, it’s important to know the difference between a flare and withdrawals due to the risk to eyesight.

[SheffieldJane in reply to Telian]

Mine came after a chest infection followed by a flu jab. Sometimes you can trace the origin. It also continues getting worse unlike withdrawal, in my experience anyway.

[Telian in reply to SheffieldJane]

My experience too, although I was okay following flu jab. I've had flare symptoms following aquarobics in September, now got third UTI, a chest infection and increased BP - I've done nothing different - putting chest infection down to time of year with so much going round - who knows... hate taking so many antibiotics. A flare does get increasingly worse, unlike withdrawals. I was explaining my experience of flare symptoms for 3daysinjuly. Interestingly enough my rheumie said he didn't think I was having a flare that needed increased pred, he blamed it on the UTI - I didn't believe him but he was right, my CRP was 7 and is within normal range for me - my 'flare' symptoms have much improved since starting antis.

[StillBreathin in reply to Telian]

I'm new to this, diagnosed last month. A week ago they dropped me from 20mg to 15mg. I was doing ok with that, but caught a cold this past weekend. I noticed that my symptoms started coming back... today my cold is better but my pain in my body is not, it seems to be getting worse. My question is, does illnesses sometimes affect the PMR symptoms, and does it have to do with flares? They want me to drop to 10mg on Saturday from 15mg now. Seems like a steep jump, especially when my symptoms seem to be coming back.

[Telian in reply to StillBreathin]

Hi Still Breathin - love the name!

Seems the 5mg drop might have been too much and definitely too quick to be looking at another drop when you've got symptoms. Tell your doctor how you feel. The PMR is always there, the pred only treats the inflammation and as long as you're on a high enough dose to treat it you should be symptom free. Having said that some illnesses can disrupt your PMR, like flu jabs or the simple cold can set you back but it's probable you haven't been on 20mg long enough to have good effect on the PMR. Don't try a reduction when you are unwell.

Your symptoms might be withdrawals, which should settle after a few days, if they don't rule of thumb is to go back to the dose you were symptom free on and stay there until comfortable, Only then start a reduction but I would suggest a smaller dose, say 2.5mg. If you were to still suffer withdrawals after say a week, don't reduce and when you do it might only be by 1mg, discuss with your doctor as they need to help manage it with you. This is how you'll find a level that suits you. Were you symptom free on 20mg? If not that dose isn't enough for you and you might need to go higher say 25mg. It is trial and error BUT don't be rushed by your doctors into reducing. Talk to them and say your current dose isn't working for you and you would like to slow it down. It's false economy as you'll just yo-yo back and forth. The first year is the worst and it does get better so be patient as stress doesn't help either. Try to rest as much as you can too.

Take it slow, listen to your body and you'll get there at the same speed as trying bigger drops that your body can't cope with. As for the cold, you will pick these up very easily as you're immune system is compromised. Try to steer clear of coughs and sneezes at home and use your winter scarves to cover your mouth in public places supermarkets/doctors - worse places for picking up germs especially at this time of year. I've gone into the supermarket with no sign of a cold and by the evening had a full blown one including sore throat and earache.

You'll get plenty of advice on here so take the bits that help you as what works for one doesn't another.

Best wishes.

[StillBreathin in reply to Telian]

Thanks Telian, that was what I was thinking. The 20mg at the beginning did take away all of my symptoms...which was absolutely amazing/ life changing. To feel normal again, I just didn't think I ever would. Anyway, when I dropped to the 15 mg.. the first few days I did feel like I had to get use to it, and just when I was starting to feel ok, the cold came on. I got past the cold quicker than I thought, which is fortunate. Now my symptoms are starting to subside a bit again, not completely gone, but much better.

I had just wondered when we get sick, having PMR, do the symptoms sometimes creep back while our systems are compromised?

[PMRpro Ambassador in reply to StillBreathin]

Yes - being ill puts stress on the immune system and can make the PMR symptoms feel worse. Even a cold can do it for some people.

[3daysinjuly in reply to PMRpro]

Great. Two people in this house are coughing away and sick.

[StillBreathin in reply to PMRpro]

Thanks, PMRpro, makes it even more challenging.

[Telian in reply to StillBreathin]

That's good the steroids worked in the first instance, it proves the diagnosis was right. We pick things up instantly due to the compromised immune system and they can take longer to go - I nearly always have to have 3 lots of antis to treat a chest infection - bearing in mind I never had a chest infection in my life before GCA/PMR, I have both. And try to avoid stress as that doesn't help either.

So symptoms creeping back- yes they can, your body is constantly fighting itself where it used to protect us. Steroids don't treat the illness they treat the inflammation and is why you need to find the optimum level that suits you.

[StillBreathin in reply to Telian]

Yes, it is good that I was symptom free for about 2 weeks, while I was on 20mg, then when I dropped to 15mg it didn't seem like it was too bad, but then I caught the cold. My Doc said to jump back up to 20mg for a couple of days till I felt better, then drop it back down to the 15mg. Then she wants me to go down to 10mg, not long after that. PMRpro, told me about the 10% drop for tapering... I'm going to see if I can't find that in some literature to give to the Doc.

[PMRpro Ambassador in reply to StillBreathin]

Part of it is you have to try to explain that you aren't reducing to get off, you are tapering to find the lowest dose that is right for you to manage the symptoms as well as the starting dose did. In the early stages of PMR that may be considerably higher than later and so it is all too easy to miss the dose and cause a flare. Many doctors assume flares are normal - but it is said in the medical literature that the primary cause of flares is reducing too fast or too far and a reduction of more than 1mg per month is predictive of flare.

This paper isn't as slow as some of us would like but it is much slower than your doctor is trying and reduces the rate of flare from 60% to 20%. They do not use larger than 2.5mg drops down to 10mg and from there only 1mg drops. The paper was written to help GPs manage their patients better:

rcpe.ac.uk/sites/default/fi...

[StillBreathin in reply to PMRpro]

Great, thank-you PMRpro, this will do nicely. It's very well laid out and easy to read too witch is nice. Thank-you for all your advice, this helps greatly.

[PMRpro Ambassador in reply to StillBreathin]

Think you need to find a doctor who has the slightest idea of how to manage PMR because at present that is not the case. PMR is a chronic illness, it has a median duration of 5.9 YEARS, not weeks.

When tapering a pred dose to find the aim (the lowest dose that manages the symptoms as well as the starting dose did) no drop should be more than 10% of the current dose. Your first one was 25%, the next postulated one will be 33%. Tapering to titrate the dose is not the same as reducing the dose to get off pred. 2.5mg at a time is more than enough - 5mg at a time will achoeve one thing: a flare and a return to the beginning.

[StillBreathin in reply to PMRpro]

Thanks PMRpro, I will definitely talk to her about the tapering. Thanks for the heads up. I was also wondering, what are the youngest that people get diagnosed with GCA? I went to have a check with an eye doctor, he said I didn't have it cause I was too young. He said I needed to be over 60. I'm 54.

[PMRpro Ambassador in reply to StillBreathin]

Well he is talking rubbish. The guidelines say over 50 and no diseases count their victim's birthdays anyway. We have several biopsy proven cases on the forums in people in their 50s and in the medical literature there are reports of patients even younger together with warnings to not miss the diagnosis solely because of misapprehensions over age.

There are diagnostic criteria here:

sciencedirect.com/science/a...

There is a report in the press about a 37 year old male from South Wales who died of a stroke caused by undiagnosed GCA - not media hype, it was diagnosed at post mortem by the pathologist. Pathologists know it all - just too late.

[StillBreathin in reply to PMRpro]

Interesting article thank-you! The eye doctor was a real jerk... obviously doesn't keep up with the latest thoughts and knowledge on the subject.

You wouldn't by chance have the reference to where it says that tapering should be done by 10% off your dose, do you? Then I can show it to my Rheumatologist.

[PMRpro Ambassador in reply to StillBreathin]

I can't remember the original paper I read which was by experienced endocrinologists in the USA. I found it several years ago.

This cssassociation.org/patient-...

is based on patient experiences done in - where they say the concensus was that 10% made it easier.

[patriciawhite in reply to StillBreathin]

You don't NEED to be any age ,there are averages in anything and then there are exceptions to the expected normal .How myopic of him ,as in unimaginative, uncreative, unadventurous, narrow-minded, .

[StillBreathin in reply to patriciawhite]

Yes, totally agree!

[3daysinjuly in reply to Telian]

So, when reducing, I can expect some pain/stiffness that should only last a few days and then level out to the way I was?

[PMRpro Ambassador in reply to 3daysinjuly]

Unless you have got down to a pred dose that simply isn't enough to manage the inflammation. You aren't reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms. And that isn't the same thing at all.

[Telian in reply to 3daysinjuly]

You can if you’re on the correct dose - see PMRpro’s reply - below.

[Telian]

Yes - it takes up to a week for me but we are all different - the symptoms will be uncomfortable and pain killers won't help, I take paracetamol which just helps deaden the discomfort. Don't start another reduction until you're symptom free and it can vary each drop so just get to know what's right for you.

[Sandradsn in reply to Telian]

I agree,don't try to reduce or taper if you are having any pain and discomfort.😞

[PMRpro Ambassador]

There is every level - you may be on the early stages of a mild flare - or the later stages of a fierce one...

[PMRpro Ambassador]

A flare is a return of symptoms - at the start they will be less, ignore them and then they are likely to increase and eventually you will be back where you started. If you have any sysmptoms it is a sign that the dose of pred you are on is not quite enough to clear out all the new inflammation created each morning - and even tiny drips of water will eventaully fill a bucket and overflow.

[patriciawhite]

A flare for me usually ,Tender scalp ,weakness ,temper ( frustration at the flare too )Pain aches and stiffness .Every one is affected differently but the thing to remember is it can be dealt with .See your Doctor /Rheumy /or ring them . Don't immediately think OMG it,s coming back ,it hasn't left .It is being controlled ,It will get easier honest but meanwhile keep on top of the symptoms .maybe tread water with the pred for a while .