I've had PMR for nearly 12 years now so have had more flares than some people have had hot dinners (old Yorkshire saying). Touch wood, not had one for a while now, but here's how I personally can tell the difference:
Have the symptoms I had BEFORE being diagnosed and put on Pred returned, even if to a lesser extent? My main symptoms were very stiff neck andshoulders, morning stiffness making it hard to get out of bed and get moving, hip stiffness (especially when trying to walk up or down stairs) and extreme fatigue.
IF I can still raise my arms straight up in the air, get up out of a chair relatively easily without too many 'oof' noises and climb stairs wihout feeling my legs are made of wood and I'm being stabbed in the bursae/hips then I conclude it's something other than PMR flaring up and an increase in steroids probably isn't going to help. If it does feel like a PMR flare I don't let it drag on more than a few days or I know from past experience it escalates (the dripping tap analogy) . I increase the dose by 5 mg for up to 5 days before going back down to the dose 1mg above where I flared.
IF you reduce steroids and feel very unwell indeed, like you've been hit by a bus, feel nauseous, complete lack of energy, dizzyness AND you're at a dose of around 5ish, it's possible that you're having adrenal problems - see other posts about that including some of my own experiences. Again, in my own personal experience I increase the Pred temporarily to see if it makes a difference nd if not see a Dr pronto.
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tangocharlie
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Flare, Steroid Withdrawal, Adrenal Insufficiency or DOMS. Distinguishing them apart, especially if there is overlapping symptoms, can indeed be a challenge. After 5+ years I've listened to my body, documented symptoms and daily pred dose/tapering schedule. During this time I've had 5 or 6 flares and have tried to learn from those experiences so I can respond in the best way and achieve relief. Below is what I've learned about ME (everyone is different):
Steroid Withdrawal: minor stiffness and "light" PMR type symptoms that emerge early in my tapering schedule (within first week or 10 days usually) - I wait it out a few days and if symptoms persist or worsen I consider it may be a flare. If it is steroid withdrawal it resolves itself within a few days and may re-appear at the beginning of the taper down of pred.
Flare: typically PMR-like symptoms emerge mid point in my taper (often week 3 or 4 of a 7-week taper), and get progressively worse with passing days. In the beginning I would wait a week or more hoping that I had just overdone it and perhaps it is DOMS. This lead to the flare being worse (symptoms wise) and more difficult to get under control. Now I give it 5 days and examine if I've done anything or experienced stress that might spur on a flare. During my worse flare I had to go back up from 10mg to 15mg for 6 weeks before tapering again. Typically I do a "pred burst" adding 4-5mg of pred to my current dose for 5 days and then come back down 1mg a day stopping at the dose above where I flared (very similar to you tangocharlie).
DOMS (delayed onset muscle soreness): sore/stiff muscle pain post physical activity (for me usually the next day)- happened after I gardened, babysat twin grandsons over a weekend, tried walking and pickleball one day after the other, dancing, etc. I take hot showers, use my my heated bean bag sack, take Tylenol, sometimes apply Voltaren, and I try to do gentle stretches. Lastly I do try to be more mindful of my physical activity and slowly work up the amount of time I engage in physical activity, taking a day off in between to rest.
Adrenal Insufficiency (low cortisol): I've only experienced these type of symptoms twice (headache, dizziness, nausea, vomiting, fatigue). I recognized them from reading related posts on this site and I had recently tapered down to 5.5mg of pred (symptoms appeared on week two when I introduced the two doses of 5.5 per week). My first response to be honest was panic a bit. I knew it would be coming but not prepared for the fatigue (as I have not had much throughout my PMR journey thus far). I worried how long this "stage" would last as I felt downright awful. I understand if you increase your pred dose, you will feel better in the short term (I did), however it is still something you must endure and get through eventually until your adrenal system has sputtered back to life.
Thank you tangocharlie for posting about this important topic! Reading about this subject on HU was key for me, especially when I was a PMR newbie. Hope it provides some insight for others.
Coincidentally, I have just decided I am currently having a flare but I nearly always miss the signs at first. I think that is because I am always hoping that it isn't a flare! Like you, tangocharlie, I have lost count of the number of flares I have had but they are very diverse too. Usually the tell tale signs, eventually, are that I am getting worse, feel ill, am sore all over and get very tearful and distressed. All the other pains I have are there most of the time anyway.
This time, I think I have flared after having a very strange virus (tested negative for Covid) so that morphed into a flare without me really noticing. The different symptom this time was feeling much worse in the morning which is not usual for me. Of course I may be wrong and it may still be some reaction to this virus but I am now hoping that an increase in steroids will work!
There has been a lot of discussion about that recently too - the LFTs are very unreliable and one source quoted reckoned about 55% correct! My nurse daughter tested for 4 days out of her current pack issued by the NHS, all negative, and then opened a new pack, and on the same day as a negative, got a positive.
When you have a flare - do they tend to be at a similar dose of pred?
Yes, I was suspicious of the negative result. I would like to have known for sure but didn't really want to keep testing. I have behaved as if I did have covid- cancelled my vaccination for now and will rebook later.
As for the doses when I have a flare, that is difficult to answer! I have flares a lot both when I am trying to reduce, usually unsuccessfully, and also for no apparent reason. `I have been on quite high numbers this year due to a horrendous flare a year ago (due to treatment from a sleep clinic) where I ended up at 22.5 mgs and came down quite slowly as I felt so ill. I have finally got back to what is usually my safety zone of 11mgs. but then this virus hit. To be honest, I haven't felt well for a very long time but still find it all so confusing!
Yes, I have kept a diary for the whole 11 years! I am due to see Prof. Hughes in November. I was going to ask him about Hydroxychloraquine after hearing about tangocharlie but maybe I should ask about LVV and inflammatory arthritis as well?
I think when we are stuck at what they regard as higher doses, everything needs to be considered!! And "just PMR" can still be pretty resistent if you have the wrong version as several of us on the forum do have. I would love to see an MDT metting (multi-disciplinary team) meeting with some curious rheumies and all of us discussing our problems reducing pred. There is something hiding in plain sight I suspect that COULD be a key to the darned disease! Or at least a road map that might give an overview to the sat nav they tend to use these days!
Instead, if you are stuck at a higher dose, in my case anyway, they tell you to push on reducing whatever your body says, and also add in MTX. As if pain and not being able to do anything is preferable to being on steroids - well it isn't. Back in 2017 I kept being told my PMR must have gone but to me it sure felt like it was still there, and sure enough when I eventually got a PET-CT scan there it was
Funny enough, I'm having a 'routine' scan of my aorta next week, ordered by Dr Mackie, presumably to look for signs of LVV? Actually, apart from my still on-going back problems, which are also very slowly improving, I've never felt better. I'm daring to dream that either the HCQ is working or the PMR is finally going after 12 years. Cautiously crossing fingers too though, as all my worst flares have come on in the cold of winter. Maybe I should get myself off somewhere warm but not too hot for 6 months?
Not so much the cold for me - but damp and wind is my nemesis, hence the lack of desire to return to the UK! Though global warming is messing things up here - far more wind than in the past and intermittent deluges. When we first came here the snow came thanks to "Genua lows", Mediterranean low pressures that form over Genua and reach up to here. There was more precipitation further south and the cold comes from the north - result: loads of snow in the Dolomites. About 25-30 years ago that pattern subtly changed and the direction of the weather changed and winters became less snowy. The last couple of years it seems to be changing back but it is warmer - so a different pattern of snow, later, not at the end of November providing a base for the ski season followed by a long sunny winter but after New Year and not such stable weather.
I feel for you Suzy1959, our paths are so similar. This time last year I was on a high dose about 22.5-25 for no apparent reason, just a random flare up in the January. It was so hard to reduce but something, possibly the Hydroxychloraquine has helped, who knows. It was a hurdle to get from 15 to 14 an I kept yo-yoing but now am down to 12. My rheumie said to push on bu I think she was wrong so after a bit of yo-yoing ignored that and waited, and when my body was eventually ready to reduce it was a doddle going from 15 to 14 to 13 to 12 without a hitch. I will be so happy if I can get to 10 by Christmas but I will see how it goes, winter is hard on our bodies and I don't want to make it harder! Big hugs x
I can't always tell if a flare is starting, sometimes I think it could be due to overdoing it, or lack of sleep or whatever. But I've learned the difference between tiredness and 'overwhelming fatigue' which for me is one of the things that happens when I flare and it comes on very suddenly. Also, it's hard to describe, but I just feel really unwell. The two acid tests are can I raise my arms above my head and walk up and down stairs, and putting all this together helps me decide whether I need to up the dose for a few days. I will usually wait at least 3-4 days to be sure and in the meantime try and get more sleep and rest to see if that does the trick. I don't think it ever has done though.
Oddly, I didn't flare when I got Covid in summer of 2022, but the Covid dragged on testing positive for 21 days or so. I'm pretty sure a virus was one of the original triggers for PMR as I remember getting what I thoght was flu over Christmas 2011 and it just wouldn't go away. In the meantime really be kind to yourself and your body, this is not a time to be talking of 'fighting' or pushing on. Pamper, sleep, healthy food needed
,I think these are things we need to be aware of in ourselves. As we are all different we need to make our own observations and make a note of them. I have a pile of 7 dairies now which record pain levels , doses and reactions to them which is a valuable resource I refer to often
I write everything down too, in my case I also have to write what I've eaten and any 'allergy' reactions. My understanding is that the OMERACT research (Outcome measures in rheumatology ) is trying to find ways of measuring and tracking the severity of PMR in patients. Hopefully they will come up with something easy to use, but it will need to be logged on a daily basis to be useful, you can't say how have you been this week/month?
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