I developed PMR around 18 months ago, and have been on prednisolone for 14 months. Like others, I would like to taper down and get off the steroids as soon as physically possible, which has resulted in some undershoots and having to bob back up to higher doses.
During that time, I had several blood tests where my ESR and CRP inflammation markers (along with other things) have been measured. I have also been checking my temperature since before Covid (digital oral thermometer costing a few pounds, e.g. from Amazon). Oviously, my temperature can be a bit variable, requiring 'oversampling' (up to 6 measurements per day) and averaging to reduce the 'noise', but the correlation between periods of slightly raised average temperature (by a fraction of °C) and raised CRP and ESR is remarkable.
I find my temperature can be a very useful 'bellwether' for my condition (a small rise in temperature is a known symptom) and the prednisolone dose required. My temperature is more objective than whether I am a bit achey (presently due to digging the allotment) and much quicker than waiting for blood results!
I post this to ask whether anyone else has found their temperature to be a useful indicator.
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PRL1957
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Going by symptoms would be ideal, but I thought I was OK last summer getting down to 3 mg/day - until I had a flare and possible GCA, requiring a large increase (to 30 mg/day). Looking back, I can see that I would never have dropped to such a low prednisolone dose if I had looked more closely at my temperature chart.
It’s certainly an interesting thought. A few questions come to mind. Given that inflammatory markers can lag behind symptoms it would be interesting to see where temperature fits in to this pattern. Also, for those whose markers never exceed the normal range, whether their temperature acts like that too, an insignificant rise. Or whether the axes on the graph so to speak merely need changing to ‘zoom in’ for those people. You’ve obviously taken it often to remove the white noise, so what delta do you deem to be significant for you?
I would caution against assuming temperature rise after a good dig on the vegetable plot being a sign that more Pred is needed to nip it in the bud instead of a natural response to muscle damage that is more likely after taking Pred or having PMR. Another question is how do you distinguish from early illness from say, a virus, before you take more Pred?
Personally, I’ve always found all my life that if I exert myself physically quite hard my temperature always goes up but during GCA and Pred, I had trouble keeping my body temperature up, especially during low adrenal function years. One feature of Pred taking, PMR and GCA is forever changing goalposts.
Regarding temperature cf. other markers, I recently (14-18/12/22) saw my average temperature over a couple of days had gone up slightly (by around ΔT = 0.2°C). Coincidentally, I told my rheumatologist about that, during a consultation on 19/12/22, and he requested a blood sample that day; when the results eventually came to me (early January!), they confirmed raised markers (ESR = 30mm/hr and CRP = 44 mg/L).
Clearly, the sorts of temperature drifts I see are quite small and other things (such as a couple of hours 'rocking out' with an electric guitar) can raise my 'instantaneous' temperature more. (The cool temperatures outside seem to offset any temperature rise due to physical work, but ΔT = 0.5°C can happen after playing guitar.) So I take between 4 to 6 temperature readings per day and calculate a moving average, and only act on a consistent change over a couple of days.
I am 'fortunate' that my condition was brought on by Covid vaccinations (although I believe other vaccines and infections can have similar results). So, having refused further vaccinations, I am still relying on isolation (I am retired), distancing, hand-gel and masks to stay safe from Covid, which seems to have also saved me from other infections.
At least in my case, it appears that only my PMR is affecting my average temperature, but, clearly, that might not be true for other people.
And as for changing the goalposts, it seems that PMR is quite happy to change the pitch and even what game we are playing.
It would be great to get blood tests more often to hold alongside but that’s in one’s dreams. What is the accuracy of your thermometer? Mine is +/- 0.2C.
I guess my concern is that body temperature can go up before the actual cause is known eg viral illness.
It is interesting how for some vaccines were the straw that broke the camel’s back, while for others the actual infection did it. For me 4 covid infections didn’t cause any relapse. It’s worth saying perhaps that relapses aren’t necessarily caused by a repeat of the first insult that triggered the body to go a bit mad. Posters here have also reported emotional shock, stress, a fall, holidays, house move and illness to have caused a relapse.
My digital thermometer (by Brannan - but I cannot find the specific type) appears to have a precision of better than ± 0.1 °C. Over 10 repeat measurements, I got an average of 36.41°C with a standard deviation of 0.06°C.
As for your comments on what caused my PMR, my wife was vaccinated at the same times, with the same batches that I received, and she was perfectly OK. (She claims it is just me over-reacting like a diva!) Neither of my doses even caused any fever or local pain around the injection site, while my wife's arm was a bit sore.
It was my temperature that first indicated a problem. (We had both been checking daily, since the start of the pandemic.) My temperature started to rise noticably after my 2nd dose, although I seemed to have a few days back in my normal range just as the PMR pain started. My temperature peaked (up by 0.8°C) after another month and then slowly drifted down towards my normal range - although it never got there and the PMR pain etc. persisted until I started on prednisolone. But, looking at the longer term trends, I think my temperature was showing a slow upward drift after the first vaccination.
I suspect that a Covid infection would have caused me the same (or worse) effects. I had the Pfizer-BioNTech vaccine, but I doubt that I reacted to the emulsifying agents in the formulation. So, the virus would have delivered the same bits of mRNA (albeit, linked to the rest of the viral nucleotide), generating the same spike protein, along with all the other biochemical guff the virus produces.
Literature suggests that the viral RNA activates toll-like receptors that can initiate undesirable autoimmune responses, e.g. see: Vierbuchen et al. (2018) DOI: 10.1111/all.13680. This sort of response to RNA vaccines was known for some time; e.g. see Kariko et al. (2005) DOI 10.1016/j.immuni.2005.06.008
Hence, to minimise adverse reactions, modified bases (pseudouridine) are used in the RNA vaccines, as described in a recent Nature feature article (The tangled history of mRNA vaccines, Elie Dolgin, Nature, Vol 597, 16 September 2021).
Hi. I personally have never considered temperature as a guide for prednisolone dose and would be wary of doing so simply because I’ve not heard of any scientific research that would indicate its usefulness.
For clarification, are you saying that you adjust your pred dose according to your temperature? What does your doctor advise?
(Apologies if I’ve missed something.)
May I suggest that 14 months on Prednisolone is a relatively short time and that maybe your desire to “get off the steroids as soon as possible” has actually hindered your remission and caused a return of symptoms necessitating a return to higher dose?
I am no expert but have been a member of Healthunlocked Uk for a number of years and have learned that yo-yoing between doses can and very often does impede progress.
I think the problem with temperature might be that other factors (activity, other infections and circadian rhythm) also affect it, so I take 4 to 6 readings per day, calculate a moving average (over 5 points) and only change my pred dose if there is a consistent drift over a few days.
In my case, however, isolation (I am retired), social distancing, had-gel and masks have saved my from any other infections, so only my PMR seems to be having an effect.
Coincidentally, based on temperature, I raised my pred. dose slightly (from 10 to 12 mg/day) just before my most recent rheumatology consultation. I told the consultant, who rewarded me by requesting some blood tests on that day, which confirmed my ESR and CRP had gone up.
And, yes, I think I was overly keen to get off the pred. last year and reduced my dose too rapidly. Looking back, my temperature record would have told me not to.
That is interesting. I do feel feverish and all I’ve done is ask my husband if I feel hot and he always says no. I bet I am up a few degrees at times. I don’t pay much attention to my inflammatory levels because they are artificially held down by Prednisalone. The clearest indicator is how you feel though. Currently I feel pretty viral. I have either picked something up or am responding to the stress of recent investigations in hospital. I am reluctant to increase Pred ( my Rheumatologist trusts me) because my abdomen is inflamed.
The temperature drifts I see (after calculating a moving average, based on 4 to 6 measurements per day) is only around 0.2 to 0.4°C. So, I have to look for trends over a few days. My 'spot' temperatures are affected much more by activity and circadian rhythm.
I have also seen in the literature that a small temperature rise happens with PMR - though not enough to constitute pyrexia - so you would only find it with a thermometer.
" don’t pay much attention to my inflammatory levels because they are artificially held down by Prednisalone."
No - they are held down by TCZ, Pred alone doesn't usually hold them down if the amount of inflammation created by the autoimmune disorder is more than the pred you are on can manage.
I think the only time I have had my temperature taken recently is during Covid, when it was always around 35 degrees C or so. I am not sure I have a thermometer, I may have a mercury one floating around the bathroom. If I feel ill I just use my hand on my forehead!!
oooh, this sounds like a research project in the making! Stands to reason. With more inflammation you’d have a higher metabolic rate which can cause temp rise. It’s why some lose weight before treatment. Would have to explore the practical application as temp can be affected by many factors.
I will continue collecting and charting my temperature readings. (As a nerdy scientist, I am supposed to be fixated with Excel spreadsheets!) But I do not know how often I will have bloods to compare with: my most recent samples were given mid January and my next rheumatology appointment should be in the summer.
I was hoping other members of the PMR club might want to join in with their own temperature measurements.
Temperature variation is an interesting potential indicator. I know my right shoulder is symptomatic but temp runs normal. Maybe the safest bet for pred dosing is temp plus more weight on symptoms.
Good catch, PRL1957! I would be very interested to see research based on this idea. Instinct tells me that (like most tests) it would not be foolproof but surely better than waiting for lab results!
There is an electronic gadget on the market called a fitness tracker that can track your temperature and lots of other things all at the same time without you having to go to all the trouble. I don't know how accurate they are but for $25 USD...
The fitness tracker idea sounds interesting. I recently realised that some ladies regularly check their temperatures to monitor ovulation, and the big online 'A' sells a digital thermometer (for £15.29) that gives temperature readings to 2 decimal places, claiming an accuracy of ± 0.05°C and precision of 0.01°C.
I'm sure the device can be that accurate - unfortunately the human body may not be as reliable!!! Ambient temperature has a lot to do with the reading - I laughed every time I went into the local hospital and couldn't pass go until the facial scanner accepted the reading. Irrespective of external temps in the low 30s in the summer and minus ten in the winter ...
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