Hi all I've just dropped to 9mg of pred from 10mg this is my 5th day I have to stay on this for a month then if I'm ok drop to 8mg, so far I haven't had much pain but sleep or I should say lack of it is still a big problem and today I have been so exhausted I feel so drained I was just wondering is this normal as you reduce
thanks hope everyone is doing ok Molly
You'll get lots of advice but I'll just give you my recent experience. I am now taking a calcium spplement at bedtime with a small snack, and ever since I have been sleeping really well, even nights when usually I would have been too wound up to drop off. This has been going on g=for several weeks so doubtlful it is a coincidence as I've been an intermittent insomniac my whole life.
sorry about typos.
Any particular calcium supplement I am getting desperate for sleep , the sweats seem to have got worse again as well 😰
I am taking a supplement called strong bones which includes calcium hydroxyapatite. When I mentioned this to others, because I was a bit puzzled, I was told that calcium does help induce sleep, so I guess it is working for me. The supplement includes other things that go with calcium, like D3, K2, magnesium, etc. I live in Canada but wherever you are there is probably something similar available. i have to take 2 capsules three times a day (NOT with pred, nor iron if you need that too).
I take my calcium/vit D supplement at lunchtime and before I go to bed, at the advice of my excellent pharmacist.
I think I had better seek advice on this as I already take the recommended dose of vitamin D so don't need calcium with vitamin d in , I've been looking at magnesium and calcium as these are good for sleep supposedly , I am a bit wary of calcium as I had kidney stones last year so I'm at higher risk of getting more and too much calcium can cause them
Sorry to hear of your sleep problem. Mine is a bit intermittent but mainly sleep is not a problem now. When I covered out of hours I would be up and down the country and home at odd hours on a high from the adrenalin. I used to have a cup of warm milk which almost without fail induced sleep(the calcium). I know some people don't like milk so realise it may not be of help.
Molly, you are wise to be wary of taking calcium supplements if you have already experienced kidney stones. Dietary calcium should be fine, and the Vit D3 supplement will ensure that sufficient calcium from your diet is absorbed into your body. Supplements are fine IF we need them but can cause problems if we don't or if we have other problems that put us at risk of becoming hypercalceamic. For instance, I have reduced kidney function and taking a calcium supplement could worsen that function. For that reason, I am advised to only take my Vit D3 supplement for the 3 months of winter so as not to cause an overload of calcium. I also have blood tests to check my calcium levels from time to time. As you have experienced kidney stones, if you don't already do so, you may be wise to do the same.
Thanks I think I will try the hot milk go for the more natural way , I had thought these symptoms would be starting to decrease a bit by now sleep depravation is awful I just have no energy
It's those very problems that mean we should be taking more Vitamin K2 if we need calcium supplements. Otherwise the calcium does not go into the bones where it belongs but deposits itself elsewhere. Hence being implicated in heart attacks and strokes.
Molly, make sure you are also taking Vitamin K2. There is growing evidence that this vitamin is key to guiding the calcium into the bones where it belongs, otherwise Vitamin D3 doesn't know what to do with it, and it gets deposited elsewhere, like the blood vessels. Vitamin K1 is available in our food, but this is very little help for the bones, it is K2 that you want, and it is hard to get from the modern Western diet. Re your calcium - why not take your dose at bedtime? I wasn't suggesting you take more than you already do.
Molly, oops, I see you are not taking calcium at all. The warm milk (which personally makes me shudder as I remember Horlicks from chlldhood and hated it) might be just what you need. After a nice warm, relaxing bath and abstaining from screen time.
I found a plant based calcium on Amazon.....don't know if you
are UK or U.S. but it has the K2 and other stuff recommended
I take plant based calcium at night....pred in the a.m.
Haven't noticed any sleep changes....There are several
things that can happen to you if you take too much calcium
The body doesn't throw off the excess and it stays in the body.
Not good......
I'm in the uk Faye I haven't even heard of vitamin k2 that's a new one on me I might look on Amazon for that thanks
Molly, if you drink coffee during the day then reducing it might help with your sleep at night. I rarely drank coffee during my PMR/GCA days and even switched my tea to decaf. Chocolate was another thing that would keep me awake if I indulged too late in the day. Also avoid spicy food and alcohol and eating heavy meals late in the day. Turkey and lettuce are known soporific foods that help with sleep. Something that I found helped was to have a little walk in the late afternoon.
It's pretty well impossible to overdose on vit D - there's almost none in your diet and it is now winter so the daily intake should be at least 2000 IU. The RDA is 600 IU! That's because it is based on older ideas about what is needed and more recent work suggests a much higher level is required for healthy bones and calcium absorption.
I live in northern Italy - where it is theoretically possible to make enough vit D from sun-exposure all year round. A study a few years ago suggested that even so, 80% of the population is deficient in vit D and, as a result, at risk of osteoporosis because they aren't absorbing calcium properly. When you take pred it is even worse so rather more vit D is needed.
Ask your doctor to check your blood vit D level - that is the only way to know if you have enough or can safely take more. Since you have had kidney stones you would be better making sure you have a lot of dietary calcium and adding vit K2 which is said to make sure the calcium gets where it is meant to - the bones - and not where it shouldn't be
The northeast of England is actually very up-to-date on the theories and a local practice info sheet says:
"Current UK guidelines define deficiency as having blood vitamin D levels below 25 nmol/L, but there are those who argue that this figure is quite conservative and that levels associated with optimal health may be more in the region of 75-150 nmol/L."
If you want to read a very good article about vit D google teamvalleywellness vit D test. I really do recommend it.
It's important to know the UNITS used for the level - they also use another unit of ng/ml. There is a 2 1/2 times difference in the figures and it is important not to mix them up.
If the sweats have also got worse again it sounds as if you are somewhere about the borderline for the dose you need at present - you aren't heading for zero, you are looking for the dose that manages the sympotms as well as the starting dose did.
Once you get to 10mg the drop of 1mg is 10% - as you go further the
% increases. Maybe you'd manage better with half mg drops now or using the "Dead slow and nearly stop" approach that a lot of people on the forums have found works better to get them to a lower dose as their body doesn't rebell as much against the change.
Below about 8mg your body has to start making its own natural corticosteroid again but that level varies from person to person, higher in some. lower in others. One of the signs it isn't catching up yet is increasing fatigue - and dropping the dose by 1mg every month will make that fatigue worse.
I had my vitamin D levels checked as part of normal checks before pmr diagnosis ,I didn't expect them to be low then as I had been deficient a few years before and I'm on a maintenance dose of vitamin D for life which is 800iu though at the minute I am on a 1000iu, my Dr said my vitamin D level is within the normal range now at 78 it had been 19 when I first had problems , unfortunately I am very fair skinned and burn very easily and quickly so use a high factor sun cream I have tried waiting for 20 minutes before applying but find after 10 minutes I am burning. Yes the sweats seem to have got really bad I am literally dripping at times so you reckon after a month of 9mg I should reduce to 8& a1/2 ?
That sounds good with the vit D - but I hope they check it occasionally to be sure it is still in the good range. Mine was about 20 when mine was checked originally and I managed to get it up to over 50. I spend a lot of time outside and rarely use suncream but it still got low. One lady on the forums developed PMR-type symptoms purely due to low vit D. She was put on the very high dose Dekristal vit D and got it up to a satisfactory level and the symptoms had started to improve within a week or so - but 6 months later the symptoms came back. Vit D was way back down! So it needs to be checked every so often anyway.
No - I think you need to talk to your GP and say the symptoms are reappearing. If it were me I wouldn't reduce any further for a couple of months at least. Getting below 10mg poses a problem for many people, it isn't clear why, but pushing to reduce too far too soon will only result in a full-blown flare and having to go back to the beginning. Which no-one wants.
It is thought by some that the autoimmune disorder waxes and wanes and when it is more active you need more pred. It can happen at any point - but I am happily at 5mg (it took me a LONG time to get there mind) and have managed to reduce to 4mg, which seemed fine, so I tried to get to 3mg. I've done this twice now, and the sweat have come back, epecially going from 4 to 3. At alternate days 3 and 4 the aches started to reappear. Having discussed it with the GP, I've gone back to 5mg and after a week or so I realise just how much better I feel there than even at 4mg. I was feeling "ill", nothing I could really put my finger on but no energy, really couldn't be bothered and just "not right". Much better now and I think the sweat are going away too.