Symptoms tracker/pred dosage planner?

[Peggles]

Hello

Has anyone got a method of plotting symptoms against their pred dose they can share?

I feel that I need to be more proactive in what I do. I'm currently just stumbling along and as patience isn't in my nature, I'd love to feel I'm doing something

[SheffieldJane]

Hi Peggles it's Jane. A simple symptom diary can teach you a great deal, dose and how you felt that day, sleep, naps, activities and dose. I was given a booklet to complete for a survey that my Rheumatologist is doing on the fatigue in PMR. I had to circle numbers from 1-10 from very bad to very good to assess the quality of my sleep. I had to record how may times I got up in the night. I wore an activity monitor and recorded the time I put it on in the morning ( removing it for a shower) then the time I took it off at night. It recorded my steps taken, this was a big surprise, it also made me try harder. These devices can be found on smart phones, or the belt type one I have retails at about €50. I wore another monitor that sent data to the research study computer ( not fully explained). The timings for everything were recorded. E.g. Shopping trip 11am -12 noon. Pilates class 10 - 11. Nap 3pm -4pm.

This is useful when you are tapering your Pred dose and for realising that you feel awful because actually you did much more than you thought the day before or that argument with your son has knocked you for 6. Hypothetical ( my son is mostly a lamb).

It gave me a sense of control and I could see patterns emerging. Sometimes it let me see that things were not as bad as I imagined.

I hope this is the kind of thing you wanted.

Best wishes!

[markbenjamin57 in reply to SheffieldJane]

Jane, totally agree about a 'sense' of control and making sense of patterns, however you do it

[markbenjamin57]

Hello Peggles

Ah, the 64 thousand dollar question, and I'm sure you'll get lots of ideas here!

For me, simply keeping a brief narrative in my diary does the trick. I use descriptive / qualitative terms for plotting symptoms ('outputs') ranging from 'wiped out' to 'tired', 'ok', 'better', 'lively' etc. against the possible 'inputs', i.e. physical activity, stress levels, pred dosage (reductions / changes in when taken, etc), and even the weather (!).

Over time, I've been able to start to see a pattern of the most likely and / or regular triggers for a flare and / or steroid withdrawal symptoms by roughly correlating my 'outputs' (symptoms, or lack of) to recent 'inputs', say, on a weekly, rolling basis over time. Alternatively, I'm also able to identify when and why my symptoms are improving. Yes, it can and does happen!

The above isn't t very scientific but it's simple to do and helps to makes some sense (Cause and Effect) of what's going on, and why - the 'WHY' bit seems to be the main challenge for many here! If you make-up your own descriptions of symptoms, it helps to 'personalise' them in language that you can relate to.

Another (quantitative) approach is to identify the symptoms and give each one a score, say 1 - 5 (low to high), as above, and record them daily. I tried this in the past but found it to be too much driven by the 'metrics' and ended up with a headache trying to over / cross-analyse them! Note to self? - don't over-analyse to the point of getting stressed - some bits of the Cause and Effect process with PMR / the preds can't be predicted or measured in a meaningful or accurate way, it just happens. And, of course, Stress feeds back into the symptoms equation..

Finally, try not to get overtaken by feelings that you aren't doing enough in the plotting process. Again, feelings of not being in control can be stressful in themselves and counter-productive symptoms-wise. If patience isn't in your nature (I can relate!), keep your 'plotting' method simple and user-friendly - and just look for patterns / trends of Cause and Effect over time. If they're improving, then it suggests that things are going the right way, and that's reassuring in itself. If not, than at least you have some clues as to why, and what to change in the process.

Hope this helps, it'll be interesting to hear what others have to say on this topic.

MB

[Peggles]

Thank you both - I have an app on my phone which shows steps taken and km covered. Whilst I'm confident it's not 100% accurate, I'm hoping it will show a trend?

[markbenjamin57 in reply to Peggles]

Yep, I'm sure that spotting bigger trends is Key in the process (rather than micro-analysis)