This is my first post. I've been here for some time, and most of my questions have been answered just by reading all the quality info available here. Now I'm asking for some more info and experiences regarding flares. You can read my history which is fairly up to date. I've been on 5mg with no pain since October 2019. I've had the occasional short term flare (1 or 2 days) due to an obvious cause like a medical procedure. I'm used to going to 10mg for one or two days and then I'm good again. This time I'm stumped. Full on return of symptoms as they were when PMR started. The pain started on Friday 8-Jul in the afternoon according to my diary. I took 10mg for one day and that didn't seem to do anything. I probably should have gone for longer at 10mg, but I tried other things. Bad choice, but that's water under the bridge.
The pain was coming and going and I was able to carry on "normally" until 26-Jul when I got really bad. Went to 10mg Pred from 27-Jul to 3-Aug and that seemed to help after a week. I experimented with 9mg for two days and things deteriorated so went back to 10mg where I remain.
Going back through my diary I don't see very many stressful things or too much overdoing it which would kick off this episode. I thought I had the pacing myself sorted out after all this time. But now I'm feeling like a beginner.
Any insights about these kinds of flares which aren't due to tapering? How often have people experienced long flares? I have a face to face appointment with my GP in 2 days so I'll be able to discuss it with him. Blood tests might be indicated, but my personal level of CRP is 1 (occasionally up at 2 under duress) going back for a decade. CRP was 23 when I was first diagnosed. Since I've been on pred CRP just stays around 1 or 2 even at the times when I've been in hospital with acute bacterial prostatitis and sepsis.
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pata63
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Not surprised you are a bit flummoxed by latest episode not reacting as other episodes have, especially as you cannot pinpoint anything that seems to have triggered it.
The only thing I can suggest is that because you didn’t get the pain you had under control in June ( and although you say previously a day or 2 at 10mg sorted things….I wonder if they actually did), the inflammation has been allowed to build up over the following weeks/months without you realising it. So now you need more Pred to get things back under control.
It’s almost like the beginning for some when it’s takes weeks or months for the inflammation to slowly build up, until it’s gets to the point when it causes a real issue and people realise there is something wrong and seek advice.
Also wondering when you say the 2 days at 9mg things deteriorated whether that was steroid withdrawal ….and might have improved if you’d given it another couple of days….but as you say, water under the bridge…
My first thoughts were similar to DL. I also wonder what is 'return to normal'. Pmr normal or pre pmr normal? Are you doing too much? Hope dr appt helps to clarify what is going on.
I put "normal" in quotes because I was talking about my post PMR normal. No way could I be doing what I was in 2017 pre PMR. Sorry I wasn't more explicit.
And yes everybody, I will report back after my GP visit. There should be some other interesting things to report because I've also got my second gut biome assay to go though with the GP. After my first assay in 2019 showed an overgrowth of "bad" bacteria, I went through a protocol to redo my gut biome. I'm expecting it has drifted off again and I will be redoing the replacement protocol again. I'll put the gut biome and anti inflammatory diet information in a separate thread since it is probably more findable as a separate topic. Same body, but separate topic. 😀
Hi - l didn’t realise you were from NZ 🇳🇿 We Cruised into & around NZ back in 2012 & just Loved It!
Glad you have an appointment to see GP & discuss, sometimes however PMR has a mind of its own & no amount of trying to fathom it out offers an explanation.
You’d been doing really well on 5mg Pred so l can imagine you’re frustrated at the changes now after all this time……
As DL says please let us know what GP says - l’m getting my bloods done on Tuesday before l/Doctors have think what’s going on with me…
PMR is an autoimmune disease that is not very well understood. Flares are reflective of the intensity / build up of inflammation which is manifested by pain when insufficient prednisone is present to negate the inflammation. Additionally, a sudden downward drop in the dosage of Pred can cause additional unwanted and possibly dangerous side effects depending on the magnitude of the decrease.
You are assuming as time progresses the disease will abate, not an unwarranted assumption, but not necessarily correct.
We don’t know what causes it, we do know taking Pred allows us to continue to function. If was able to plot disease progression in some people it “may” look like a steep rise, with a plateau with some up and down spikes and a shallow return to zero. Other’s may get to the plateau thats a saw tooth pattern of varying amplitudes that may show a shallow upward and downward trends but the average is at or slightly below the initial plateau. We don’t know because we can’t plot the disease, only the amount of Pred we take and any pain at the respective dose. At best it’s a lagging indicator, almost like trying to predict the S&P index.🤷🏼♂️
I think you aren’t staying at a given dose long enough and/or the magnitude of your steps is too large. I suggest limiting your steps to 5-10% of current dose and take 5-7 weeks before decreasing the dose. Don’t hesitate to increase dose if you start to feel pain, the faster your response back to where there was no pain the quicker you can alleviate it. If you procrastinate and the pain escalates you’ll need to increase it above your previous old dose but don’t jump too high or you’ll not know where you are. Were you ever told after a surgery to start taking pain medication immediately so that you don’t get behind the pain? Same thing applies. As soon as you feel a pinch immediately return to the previous taper old dose. Don’t wait until the next day or the day after. Do it that day! If the pain continues to increase then the next day bump your dose upward by 0.5mg and hold for two days if the pain starts to lessen, hold, that means the dose you’re on is slightly greater than what the disease requires. After another day or two when the pain is gone, drop by 0.5mg for a week to see if it returns (we’re heading back toward the last dose you were prior to flare, not lower than that). Once you get to the dose where you were ok, hold for at least 2 weeks before trying again.
There are a few of us on the forum who have had similar experiences. I had got down to below 5mg for the best part of 2 years some years ago - and while on holiday I noticed my thighs were aching after we'd been walking around the lake. Not hard walking , OH wasn't up to that even then, but I was the limiting factor! It wasn't identifiable stress - retired, camping with our own campervan, no hectic, no rush, short journey. It was the start of a proper relapse and I was back to the start and 15mg. Originally it had taken me nearly 4 years to get reliably below 10mg and this relapse took a similar path only I couldn't get below 10mg at all. 12mg was about the limit. In the last 4 years it has been one thing after another and I'd say I have had a couple of similar relapses but without getting to a lower dose in between - and plenty of stress to feed it all.
I think it may be one form of PMR - a possibly longer-lasting, relapsing form that can be quite difficult to manage. I think it is possible it comes in two versions - shorter and very much longer lasting. It was a revelation to some of the rheumies involved in PMR research that patients can flare while still on pred and without having reduced the dose too enthusiastically. It so happens there are 3 patients involved in one of the groups who have all had similar experiences. And 2 out of the 3 I know don't have raised blood markers - not sure about the other one.
The report from my GP visit part 1: Back up to 20mg pred per day which is where I started in April 2019. I've done my blood tests looking at CPR plus a few other inflammatory markers. With the newfangled direct transmission of the lab request I don't know which others because I don't see the paperwork. The one for rheumatoid arthritis was mentioned but I'm not sure what else. ESR doesn't seem popular here in NZ, I think I've had that once or twice. I will know which tests when the results come back and appear in the online portal. Test results will be in part 2, along with how quickly my stiffness and pain goes. Back in 2019 the first Pred dose was like a miracle cure after 8 hours. Impressive since I had been suffering for 9 months. I know I'm lucky it was only 9 months not 9 years. 😀
I'll start a separate thread for Gut Biome, Inflammation, Leaky Gut and Diet. When I get that thread in place I'll come back and give a link to it here.
Morning Update (in New Zealand time): I went up to 20mg of Pred by taking an additional 10mg after my GP consultation (early afternoon). Neck, shoulders, lower back, hips, and thighs were all much happier by the evening. Some residual pain but 70% improved in 8 hours. About 2 AM a bit more pain came back but it wasn't agony to roll over in bed for the first time in weeks. Happy.
My GP has given me homework to look back through my diary for 2022 in more detail in search of a few times when I had takeaways food, my exercise levels, and any other stress factors. I have paper diaries going back to 1999 which are good for recording. What paper diaries aren't good for is quick retrieval. So I was advised I should get with the times and move to an electronic diary. I amused him by pointing out that I started programming in 1969 and have been using computers ever since. I'm looking into the right sort of software which will work the way I want. I'm fussy that way having designed software and led programming teams for many years. 😉
So that's an all clear for lots of other potential diseases.
I'm talking it easier, although I did walk 20 minutes to my 1 hr Yoga class then 20 minutes back home. Resting for the rest of the day.
I haven't got far on my homework looking at potential causes via my diary notes, and I appreciate MrsNails sage advice that sometimes there is no reason. But I still can't resist looking. I'm just wired that way. 😀
I was at 10mg when I went to see my GP and he put me up to 20mg immediately on the 10-Aug. I was on 20mg for 12 days before a followup to all the blood tests. I worked out the cause of the stress I was under and that stress was the probable cause. Given the bloods, we decided I should taper down again and see how it goes. I've done a fairly rapid taper with no problems at all. I'm now back to 10mg and just starting a taper to 9gm. I'm taking 10mg to 9 mg slower (almost DSNS) and watching for any symptoms. So far so good.
My GP got me to go back thought the year in my diary and check on what was going on in my life. This also included times when I had takeaways (Indian or Thai) which include rice, and who knows what other ingredients I don't usually have. That was an interesting exercise and showed me that I can get away with one such meal a month if nothing else is going on. In the current flare the other thing which was going on was nasty online attacks from a troll determined to undermine my published scientific work. Not because my work isn't good, but because I am an advocate of the the scientific method. The troll prefers conspiracy theories and gut feelings. The solution was to remove myself from all (anti)social media platforms except this lovely place. 👍
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