Follow up to previous post a few weeks back. Many thanks for helpful comments and support on previous post. Just to recap, when I posted last, I was teetering around 2-3 mg pred after being told by rheumatologist that my PMR had gone and I needed to stop taking pred. I should have listened to my own body. As the dose reduced, I reached the point where I couldn't walk and kept falling over. GP told me to go back to 4 mg, which wasn't enough, went back to 6 mg where I was comfortable before, still not enough, so increased again to 10 mg for a few days which mopped up the excess inflammation and dropped back to 6 mg a week ago. Feeing a bit better each day now.
I'm not sure if that constitutes a flare. I tend to think that the inflammation was building up again due to not enough pred and I needed to mop up the excess before my symptoms have stabilised. If that's what happens.
The down side of the flare, if that is what was happening, it has left my muscles weaker than ever, I tire incredibly easily and there is no stamina whatsoever in my muscles. Mowing my lawn which is a 10 ft square yesterday left me so tired and in pain that I had to lie down for an hour afterwards. So it is back to the gym and starting from scratch again, as soon as I feel well enough for that. It's disheartening, but it is what it is.
The good news is that all those awful problems that I had with my neck and the mandibular joint, seem to have partially resolved. I coincidentally bought a new pillow and hey presto! I still have to be careful of posture but the new pillow has really helped.
I had my DEXA scan just over a month ago. I was told it would take about 2 months to get the results, so still waiting. The notes in my online records say that I will get an image and I was expecting to get a list of numbers, so I'm not sure how I will interpret that or what the right questions to ask will be, come the time that the report finally turns up. I read somewhere here yesterday that ultra sound gives a better picture of the condition of your bones, so now I wonder if I asked for the right test?
Bloods were bad news. Even though I was having awful flare of symptoms, ESR was normal, as it always has been right from the beginning, so I guess that I am just one of those people that it doesn't show up that way. Unfortunate, because I think that is why docs keep saying I don't have PMR. I am back in the pre diabetes zone, as I lapsed with my diet a bit at the end of the year and put some weight on. And I am just out of range for cholesterol, the note says that I need treatment for that. Good luck with that one buddy, I have enough aches and pains and GI issues without adding statins to the mix, thank you very much. Anyway, the good thing about the online medical notes is that I can now look back and see how those numbers trend over time and the cholesterol and blood sugar go up and down exactly in line with my body weight. The good news is that I am half way back to where I was weight wise, but I can't overlook the fact that the pred is also likely helping to raise both cholesterol and blood sugar, so I reckon that I might need to lose a bit more this time. Not easy to lose weight on pred.
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"I tend to think that the inflammation was building up again due to not enough pred "
But that is exactly what one cause of a flare is.
Ordinary ultrasound does not provide bone density information - the ultrasound bone densitometer is not widely available as far as I know. There are advantages but dexa remains the gold standard.
Thanks for confirmation re bone scan. I was wondering if I asked for the right thing, but everyone else seems to be having the DEXA, so good to know. The radiologist told me that my bones were looking really good, but I am really interested in the numbers, so that I have something to monitor it against in the future. It doesn't look like I will be tapering again any time soon.
Re the flare, never sure what people mean by a flare tbh. I had taken it to be a rise in the autoimmune activity. I don't think that is what happened, although it has taken a wee while to start to feel better again. I should never have been told to taper in the first place. In August, I had only been on pred for 6 months, and the only reason that I managed to drop so quick initially is because 6-7 mg seems to be sufficient for me. Thank goodness for this forum, or I would be totally at sea with all this from some of the medical advice I have been given.
A flare is a return of symptoms, always because the current dose of pred is no longer enough to manage the inflammation but there can be two reasons for that: either you have been reducing the daily dose and have overshot the dose you need at present (that will vary over time, usually getting lower the longer time goes on) or the underlying autoimmune activity has increased while you have remained at the same dose that previously had been adequate. There are many reasons for that - illness, trauma etc etc much the same as the trigger that set off PMR in the first place. Or it might be just because and the immune system woke up a bit. I think the activity cycles - would probably make a nice sinus curve if you could plot it. You might manage to reduce the dose on a downward phase but then it starts and upwards phase and the dose is no longer enough.
In retrospect, I think I might have already been in trouble when I dropped to 4 mg. I don't think that I should have been tapering, at all. If I have learned anything from the whole escapade, it is how unwell that I still am and from now on, I will be the judge of whether the PMR has gone or not. And it hasn't. I will hit the magic 18 months in August, when they will consider that it should have gone, so it is important to hold onto that learning. After all, they can hardly just withdraw the pred and I doubt that there will be any pressure from the GP who diagnosed me, so as long as I can hang onto him, I think I will be OK.
I lost over 3 stones by drastically cutting my carbs and have kept the weight off, so no moonface or buffalo hump. I feel great for having lost the weight and it has put my steroid induced diabetes into remission. It can be done as quite a few of us have done it
Thank you jane, for the encouragement. I think I will be able to do it too, as I really don't want diabetes, so I am motivated. Though I think it may be slow progress. I will get there. I am determined. I will do what I did before. Anything that is likely to lead me astray is banned from the house, as of last Friday when I got the blood results. Plus, I have already lost half a stone since Christmas, just by being careful. I don't care if it is slow, so long as I am heading in the right direction.
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