I'm not sure if you can help, but I don't know what to do for the best?!
I posted about a month ago, I think? When I had extreme fatigue... I went back up to 5mg from 4mg & instantly felt better! But the euphoria was quite short lived 😕 About a week? I then made an executive decision to go up to 6mg & have been on 6mg for a week also. Although I don't feel as fatigued, I feel that the aches & pains are creeping back in again? I am beating myself up because I'm not doing that much exercise at the moment & blaming that! But I have had a bad cold, which I managed to stop getting any worse by dosing myself with "flu plus" & then paracetamols... And I seem to be constantly taking my 88 year old Mum for appointments - scans, X-rays, ear syringing etc etc - I think she's in better nick than me - she certainly gets more attention!!! All this involves driving & finding the place & car parks etc, which normally I wouldn't find a problem!
So now I am wondering if I should go up to 7mg, 8mg, 9mg or even 10mg??? To get on top of it & then reduce by .5
I have an appointment with a rheumatologist on 19th April (different one to the first 3 appointments, but in the same practice) My doctor has said get blood tests done a month before?
The last thing & then I'll shut up & go to bed...
Has anyone any experience of Adcal-D3? The rheumatologist prescribed this in his follow up letter, but I have had no tests to check my calcium level?
Thank you for reading my ramblings - I should go to bed - I can hear my husband snoring 😴
Hope you are all doing well 😊x
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NWFiona
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I think maybe you need to take the bull by the horns and increase Pred a but more than you have. Obviously the small increases haven’t worked as you wished, probably due to your cold and the running about with your mother.
Maybe you could try 10mg for a few days, get yourself back on track/sort out the accumulated inflammation, and then settle down down at 7.5mg. You can then stay at 7.5mg for a good few weeks, get your bloods tested towards the end of that period and take it from there.
Long term it might be wise to drop by 0.5mg - your adrenal glands are trying to get going again (that’s maybe why you are fatigued) and they need help, so slowly reduce. Any dose below 7.5mg is not going to give you anything much in the side effects line. Also try a slower taper if you haven’t, it helps as well. A couple of posts that might help
It’s not tedious reading people’s post, okay many are similar, but there always seems to be a little something that’s a bit different.
I enjoy it, I think I was maybe born to be an “Agony Aunt” as Mark would say, maybe it’s be because I’m a good listener and nod in the right places that people ask, or maybe I’ve just got broad shoulders, certainly physically as well as mentally!
Plus it’s my way of giving back. I remember how isolating these illnesses can be until you get a steer from someone who knows - ie another patient, and then learn to know the new you!
I'm pleased that you enjoy it! You are giving invaluable support to everyone. I felt very lost before I joined this forum. I hope to be able to give back one day! 😊X
Thank you, Soraya, I did have my Vit D checked a couple of times, which was low & I had a dexa scan which was ok
I was on high dose of vit D at the beginning & then on daily vit D - 10 thingies (not sure what they call them!!!)
I was just wondering because I mentioned supplements, inc calcium at my last rheumatologist app & he dismissed everything, but then prescribed the Adcal D3 in his follow up letter! 😊
Hi Fiona, I have taken Adcal D3 pretty well since I was first diagnosed. It is recommended anyone taking steroids for a while should also take vit D and calcium to counteract their side effects.
If I feel I have problems I tend to go up 5mg and then can come down quite quickly if things are then OK, as I do not need to taper if I do not stay on the high dose too long.
It sounds like you are having to do a lot and that dose isn't working for you.
Like most I am on adcal. You just have to remember not to take it at the same time as pred. I take pred am and adcal at lunch and dinner (sugar free version that is taken twice a day.)
You can take thyroxinr at night apparently it' s supposed to work better. I tried it but kept forgetting to take it before sleeping pill. It can be a long morning by time I get round to finishing taking the different ones.
At least Dr was on the ball and gave me low sugar. Normally it's the pharmacist that picks it up when.things contraindicated. I am almost 90% sure that she said these are liw sugar BUT you have to take them twice a day. Suggesting some others were once a day. These are a tub with 112 caplets, orange coloured. Still got small quantities but not like chewable ones that have sugar to.mask taste. You.might be on low sugar ones already if you.have caplets.
If this is calcium - twice a day is better than once a day simply because the body can't absorb more than about 600mg calcium at a time. So double given once a day provides less calcium...
If you do return to 10 mgs don’t drop by 5 mgs unless it’s only been a day or two. Your body will not like that and you’ll know about it. I feel for you with all the ferrying about you are having to do for your mum, when you should really be resting.
Thank you for that advice Jane! I think I will return to 10 for just a couple of days & then go slowly. Hopefully the ferrying about will get less soon - just seems to be a bit intense at the moment! Mum's doctor is really good & attentive & tries very hard to find the solution to all her problems - it is good for her, but not so good for me!
Adcal is pretty standard issue for people on Pred. I get urinary symptoms with it though. I think the chalky grains irritate the bladder. Apart from that it is sensible to take it and it won’t harm you.
The AdcalD3 should be prescribed automatically when you go on pred - nothing to do with your calcium levels being low but because pred makes you lose more calcium through the kidneys and it has been found in studies that giving calcium and vit D supplements is generally enough to protect from loss of bone density - without resorting to bisphosphonates.
You are expecting to do a lot - you will almost certainly need a bit more pred than if you weren't.
How are you? Hope your euphoria lasts for a long time 😊
I have been meaning to post an update, so you have prompted me to do it! Thank you for asking.
I took 10mg for 4 days & now I have been on 7.5mg for 9 days (following Dorset Lady's advice)
I said to my husband the other day that I have not felt so good for a long time!
I have had a couple of blips, but I am realising myself & from all the things I have read on here, that it is probably whenever I overdo it! Looking back to last year, I definitely overdid things! Foolishly thinking that the pain etc was temporary & I was going to be better & off the steroids in a year 🙄😂
On an amusing note... I am still a bit hyper! This has the effect of making me either extremely angry about things (quite scary & not me at all) or trying to do too many things at once!
The other interesting 10mg effect was a strong compulsion to buy stuff!
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Update on post re Flare or Muscle Pain 
In a quandary!
It's been a while!
Flaring again because of sickness, loss of husband, and stress etc
