Apologies in advance to those who may have read a variation on this as a reply to a thread started by Shires123.
When I was diagnosed with PMR nearly 4 years ago, I was also about 20kg overweight and I went on a 20gm carbs "keto" diet (based on information on the dietdoctor website recommended by others). After 2 years I'd lost 18kg. My blood sugar levels were really healthy and I'd got down to 7mg of pred. I actually felt pretty good, given the circumstances.
But then a little under two years ago, GCA also came calling and I was on IV pred for 3 days, then the usual really high doses for quite a while. Relief from the GCA symptoms was wonderful, but all the weight came back on with a vengeance (18kg and quite quickly) and my Hb1Ac went up to insulin resistant levels, even though I was eating EXACTLY the same diet that had previously had me gently losing weight and maintaining healthy blood sugar levels. And I felt lousy a lot of the time; still do. Most disappointing would be an understatement.
My theory is that those massive doses of pred somehow "damaged" my blood sugar metabolism, as even though I'm down to 5mg now, the weight is still not budging, although it has now stopped increasing and my Hb1Ac continues to be in the insulin resistant range. So perhaps the "damage" is slowly getting repaired? However, I suspect my cumulative dose of pred might be a factor too (I'm currently running at a total of nearly 19gm over the 4 years).
Since day 1 of pred, my blood sugar levels have been very sensitive, rocketing up at the drop of a hat, even when initially I was actually eating virtually nothing, and zero carbs to boot for a while, before I started on pred and for a few weeks afterwards before settling into the 20gm of carbs a day regime. The zero carbs was suggested by my GP – essentially a carnivore diet, which I hated. I really missed veggies! I still only eat them in moderation and only low carb ones.
I use MyNetDiary to track my carbs etc, so I know I'm still on track at 20gm of carbs per day and an appropriate total calorie intake. I know the question will be asked as to whether I'm not accurately tracking my food or am "cheating", but nothing has changed since prior to the GCA in terms of what I'm eating (and I'm just too exhausted to change it, which is why the definition of madness could well apply – "keeping on doing the same thing, but expecting a different outcome!")
I remember KoalaJane mentioning that she learned to monitor when her blood sugar spiked and wouldn't eat during that time, so perhaps my timing for eating needs to change?
But maybe it's just that a keto diet no longer works for me? Who knows…
Has anyone else experienced this or similar?