I'm on day 28 of 40mg Pred for poss GCA. While on hols last week I was having larger evening meals that weighed a bit heavy, such that when I took my Pred at 9pm I still felt mighty full. Normally, at around 10-11pm I feel it 'coming in' with a woozy head or waves of dizziness. I didn't get that on those big meal days. The last four days were the heaviest meal days and the next day I would wake up feeling jittery about an hour after getting up with ectopic heart beats which occurred on and off through the day. I've always had those beats when my body is extremely fatigued or in trouble like about to be very ill which is normally hardly ever. The first week of Pred made them terrible. I noticed a vague return of head symptoms in the mornings for the first time since they vanished completely by day 10. The penny dropped yesterday when we got home that I may not have been absorbing it properly so was getting withdrawal and flare. Last night's meal was smaller and earlier again and I felt it was a more normal. However, today I woke still feeling the pain in my temples, not bad, but there. A bit of neck stiffness at the base of the skull, eyes ok, no bulging vein and no eye puffiness like day 1. I've also had an intense headache, much worse then the original pain and it feels more like brain and less specific. I think that may be a red herring because at 5:30pm and no Pred yet (nearly cracked and took it early) that headache is easing off, but the other symptoms are still lurking in the shadows.
My question is, does the collective wisdom here think I may have had a slight relapse because of poor absorption of enteric coated tabs? Also, if so, am I right in assuming that if it is a flare, then it will have a lag before getting better? I haven't taken my Pred earlier today (yet) because the symptoms are not worsening.
As this is a new post I can finally add a pic relating to the garden thread, of my way-too-early-soon-to-be-knobbled-by-frost April garden. Then somebody can tell me how to turn the photos the right way round on iPad. A multi purpose post this one, sorry.
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SnazzyD
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Can't help you on the enteric tablets, sorry, I always had the uncoated variety. But I'm sure there are plenty who will advise.
As you've been on 40mg for 28 days, I'm not sure why the poor absorption should suddenly cause a problem now, would have thought you would have had problems before. As you were on holiday last week, did you do anything, other than change your eating arrangements, that could have caused you a return of symptoms.
I think it was commented before that 40mg is the lower end of the start point for GCA so maybe it's not a poor absorption problem so much as not enough Pred full stop. Suggest you monitor symptoms carefully and if things don't improve get medical advice.
I had 60mg in A&E which was dropped to 40mg because my eye exam by the ophthalmologist was ok, plus CT and my eyesight problems plus pain resolved in two hours.
I did feel that I wasn't getting as much on my full stomach with higher than normal fat constent, because I didn't get the usual horrid feeling before bed. The jittery feeling and no oomph the next day suggested to me that I didn't have much cortisone on board. But I could be wrong. On holiday I did rest a lot, slept very well at night.
I decided to take my Pred at 6pm today so my stomach is properly empty and eat a good two hours later to reduce the likelihood of food interference. Worth a try. Last night's meal was a bit fatty and I don't get on with fats much, so need to tweak that one.
It certainly looks that way, doesn't it? I'd give it a few more days, but the headache you mention is concerning me.....if it continues or gets worse slap in more Pred and see your GP pronto. If it is a false alarm a couple of days on a higher dose won't make much difference.....you should be able to get down to your current dose fairly quickly.
I'm not clever enough to post photos, let alone turning them right way up! And yes, I have sorted out two enormous plastic bags, one for the hibiscus (which is budding up six weeks early) and one for the hydrangea, other bits and bobs will go back into our tiny 'greenhouse' and that's all I can do, I think.
If you are using enteric coated pred then whatever is happening after an hour or two probably isn't due to pred - it passes through the stomach to further down the gut before being absorbed and that takes at least 4 hours, more in some people, and also longer after a meal. It COULD account for the morning feelings.
Even being on holiday can be stressful!
If you are worried about the headache, it might be an idea to get some ordinary pred - it is absorbed in an hour or two at most so the effect is much faster and felt by some doctors to be more reliable, Mostly though the problems that were found with absorption was in patients with inflammatory gut disorders like Crohns or the like.
The other question about enteric coated in GCA is whether you ever achieve a high enough dose to really hit the inflammation. Ordinary pred is absorbed as a spike, all fairly quickly then tapers off - the graph would look like a cliff and then taper away slowly. Enteric coated is absorbed more slowly, making a more gentle hill both up and back down, not achieving the same altitude - if you see what I mean.
I started on ordinary Pred but even with Ranitidine, it felt like acid after an hour and every time my stomach was empty 24 hours a day. Enteric coated did away with this. I do have spares left over, so that is an option. I need to wait until tomorrow evening now then, or would there be any benefit in taking another bit of ordinary today?
I read some research comparing the two types with and without food and the enteric coated got some bad press with lower levels generally and longer to peak.
My main headache has reduced on its own thankfully and before I took my Pred earlier this evening.
Re holiday stress - The journey was quite tiring just being in a moving car and the vibration etc. Perhaps I have mistaken having a nice time for being not stressful on the body. Come to think of it, when I did rest I didn't actually sleep.
I'll just have to wait and see I guess with a low threshold for seeking help, but that's the bit I worry about, because it is such a lottery.
Biopsy done 8 days after Pred was negative by the way. Sigh.
It might be worth trying more of the enteric coated - I do understand exactly why you are taking it - but maybe it isn't getting to a high enough dose. But equally - be patient.
Well to update, three hours after my Pred on empty stomach, my symptoms are noticeably better. I'm feeling a bit squiffy, so I know it's going in. Placebo? Who cares right now, I'm feeling better for now.
Just thought I'd report back on the experiment. I really was very worried to be getting symptoms back after a good three weeks without. So had two days with taking my evening enteric coated Pred two hours before a meal instead of after my main meal of the day. Firstly I have felt the Pred starting to make me feel odd again about two hours in which is good to get back because I know it's getting thtough. I had lost this when my tummy still felt the weight of food two hours down the line even when I was taking the Pred two hours after eating. On day 1 my symptoms fell away completely by four hours and haven't returned, not even in the mornings when any of them have always tended to be worse since this illness took off.
That bad more brainlike headache of day one was a red herring, was waning before Pred taken and my husband got exactly the same yesterday. It just served to make an anxious day worse.
I know two days isn't a large sample but the fact I can feel the Pred again is reassuring. 6pm does feel like an odd time to take it though, so might need to think about that one. Eating later does mean I don't wake about 5pm feeling ravenous, but it's not great watching my family eat. I could eat less I guess or split it into two small meals, but evening has always been my decent feed time and a high point in the day. Maybe I just have to learn to spread it, in order to avoid large spikes in blood insulin too.
Too much thinking so early, now where are my nuts?
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