I posted here about a month ago to say I'd been put on a 5 day diagnostic trial of Pred at 30mg and wondered if it was a bit high. Lots of really helpful replies, thank you!
What happened then was that I spoke to a different GP (let's say Dr B), who when I told her how quick and effective it had been, didn't seem at all bothered about my age or negative blood tests, and right away prescribed me 15mg for the next 3 weeks. Going down to half the dose made me feel a bit low, as immediately some of the residual soreness in neck and buttocks came back. But none of the terrible stiffness in my hips, and nothing I couldn't live with.
After a week or so on 15mg the original doctor (Dr A) called me, and she kind of 'took charge', telling me somewhat grudgingly that Dr B had given me an official diagnosis of PMR, asking how it was going and reading me the official guidelines about tapering, possible side effects of steroids etc. None of it was new to me as I'd done so much research on this forum and followed up all the valuable references, I even bought Kate Gilbert's book and read it one sitting.
Dr A seems to be dead against steroids, referring to 15mg as being a 'high dose' and warning me that if I take the Pred at a level of 7.5mg or more for 3 months cumulative, she strongly advises me to take Alendronic Acid or basically I'm going to get osteoporosis. But I'm already concerned about AA, partly because of the potential side effects I've read about, partly because I hate the idea of cocktails of drugs, partly because I don't (currently) suffer from fatigue so am able to exercise, partly because I'm 58 and was still having periods until last year, and partly because I haven't had my bone density measured so have no way of knowing what it's like now and if or when it will have deteriorated while I'm on the Pred.
I would rather manage this as much as possible with nutrition and supplements. I've gone on to low carb/GI eating and have cut out pasta, bread, cake, biscuits, chocolate & potatoes - which sounds drastic but it's been a lot easier than I thought with the help of 2 marvellous cookbooks and I feel great on it. I'd like to take calcium/Vit D and K, but the tabs I've tried so far (Vitabiotics Ultra calcium and Vit D3, which looks really good on paper) haven't really agreed with me - slight belly ache and constipation.
Does anyone have any other recommendations of high-strength Calcium/Vit D supplements? A friend recommended Together Health Calcium Seaweed Multivitamin but it only appears to be less than 50% of the NRV for Calcium.
Meanwhile today I spoke to Dr A again and she suggested I reduce Pred to 14mg as of tomorrow, then reduce by 1mg every 3 or 4 weeks until I get to 10mg, then we review - but to call her if it gets worse at any point (if the PMR becomes 'a nuisance again' - her words!)
I know that the topics of Alendronic Acid and tapering of Pred both have many discussion threads already so I suppose what I'm really wanting to ask here specifically is:
1) Should I be nervous about declining AA, given my GP is so strongly in favour? and
2) Are supplements a serious alternative?
Thanks, as ever - Robin
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Ebn49
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One quick question... have you had a dexa scan to show that you do actually need alendronic acid?
I didn't take AdCal as prescribed by my GP because (a) it contains the 'wrong' type of calcium (i.e. not so easily absorbed) and (b) it doesn't contain any vit K, which is needed to ensure calcium gets into the bones (but I do take another vit D, vit K & calcium supplement - from either Higher Nature or the Natural Dispensary).
Like you, when I started taking pred I went on a low carb diet and I didn't suffer many of the side effects (in fact, I lost weight!).
I had the same advice re AA I didn't argue I just didn't taker it. I have enough side affects to sink a ship from Preds and Metaformin Spoke to my daughter in law she is a pharmacist in Germany Her response was Dexascan all woman are offered this particularly after childbirth. I asked GP Nothing Went to see a GPexpert in PMR he is sending me for a Dexascan and chest Xray. No problem I didn't even ask him. I am going hopefully to move from Preds to Methotraxate. The latter also the prevalent medication in Germany for PMR. Its taken over 7 months of my life on hold to get to this point and on the journey diabetes dependant on steroids. Best of luck
In UK you should be prescribed a supplement when you are prescribed Pred.
Most common, I think, is under Brand name of Adcal-D3 - Calcium Carbonate (1500mg) and Vitamin D3 (400 I.U) chewable Tablet. One to be taken twice a day.
If you’re not on this, or similar then you should contact your GP.
We do recommend adding in VitK2.
We also recommend you don’t take AA until you have had a DEXA scan to prove you actually need it.
If your GP thinks that 15mg is a high dose, the heavens knows what she say about those of us that started at 80mg.
Thanks DorsetLady. I haven't been prescribed any supplements. I did ask about calcium and Vit D but she just said 'oh make sure you get a bit of sun and eat some cheese every day' ! Which wasn't convincing, and I don't mind a bit of cheese but not every day. Thankyou for the advice re Vit K and Dexa scan too. I think I'm starting to get the picture.
Thankyou, I wanted to give my GP a chance, but I have had the offer of an informal chat with a friend of a friend who's a rheumatologist, and am starting to think it may be an idea for 2nd opinion. Thanks for the reference, I will read...
After over 7 years on pred, much of it at above 10mg/day, my bone density had barely changed. I had had a scan within a couple of months of starting pred and have had 2 since. None of them would suggest I need bisphosphonates. I did religiously take calcium and vit D though. I don't have gastric problems with any I have taken, I did develop cystitis if I took them and didn't drink enough!
But first you have a dexascan to know exactly where you are - no dexascan, no AA - and then you work from the result you get.
As regards the Vitabiotics Calcium tablets, I had the same problem. Indeed I find calcium carbonate always constipates me. Unfortunately Adcal D3 which NHS prescribes is also calcium carbonate. You may find it suits you ok, though. I have been taking Solgar calcium citrate with magnesium citrate which definitely does not cause constipation! However I’m beginning to think the magnesium in it is too much for me as it sometimes causes stomach cramps after meals and necessitates a visit to the loo! I have just ordered their Calcium Citrate with D3 to try instead. One of the drawbacks with the Calcium Citrate is that you need to take 4-6 quite large tablets per day. I believe it’s not possible to make them any smaller with this ingredient. I have accepted this and got used to it as the alternative means no calcium supplementation for me.
Hi Ebn49, just an update on magnesium citrate supplementation. After a further period of time it began to cause worse stomach problems. I learnt it can have quite bad laxative effects! Since stopping it, I have had leg cramps though - it seems you can’t win! Am going to try a magnesium spray or bath salts instead. Onwards and upwards!
Hi Rache, thanks for the update! That's a shame about the Calcium citrate - I'm current giving it a go although I thought I would start on a half dose to see how I feel on them (2 big tabs rather than 4). I don't know if that's a silly idea, but until I have a Dexa scan I'm a bit in the dark. My GP hasn't advised any supplements -not that I necessarily trust her knowledge; I think she's still sceptical that I've even got PMR because she's never spoken to me about that, she's only ever talked about the steroids.
Anyway, thanks very much for sharing your experience, it is very helpful indeed. I hope you find a supplementation method that works for you. Best wishes, Robin
As far as I know, it’s the magnesium that causes the problem. I’m now taking the Calcium Citrate tablets only - ok so far but time will tell! Hope all goes well for you too
Thanks. On the ball as always! I suppose when combined in a single tablet, there must be too much magnesium relative to the calcium content for me. Looked up sprays but some reviewers say they prickle the skin, so separate magnesium tablets is the way to go 😏
I have by mistake bought bottles with gigantic tablets (lozenge shaped) in them. They are impossible for me to swallow although I do not usually have problems swallowing pills. The same company makes capsules. The bottles look almost identical (hence the repeated mistake) the dose is the same I think, but the capsules are easy to swallow.
It was hard to find a picture of the bottle of capsules, everyone wanted to show me tablets!
Sorry you won't find them in UK, but wanted to show you this format does exist. Maybe it's available online. Everything seems to be these days. I've been taking these for many years, long pre-PMR/pred.
Just followed your link. Would need to take 10 capsules to get same amount of calcium as 6 of my present ones, around 1200mg per day. Although I usually just take 5.
Your remark got me curious. I take two calcium citrate and four calcium hydroxyapatite which adds up to about 850 mg per day. I improved my bone density from -2 to -1.6 in the year between DXA scans. At a bones session I attended at my local hospital we were advised to get as much calcium from diet as possible. The rheumatologist even said she didn't believe in calcium supplements. But as she did believe in AA I took that remark with a grain of salt and I continue to take supplements! The 1200 mg maximum RDA does include food sources. I trust that I get enough from my fermented dairy, the milk in my tea, salad, and other foods along with the supplements.
The NHS prescription in the UK for people like us is the total 1200mg per day of Adcal D3, that is 2 tablets twice a day. I usually aim for 1000mg in my supplements as I am very worried about my osteopenia but whatever you are doing is obviously working! I envy you. My recent dexa showed a reading of -2.2 which is, strangely, no change from 2 years ago but it is very close to osteoporosis and I wasn’t taking steroids until April 19. I have the usual dilemma of whether to take the dreaded bisphosponates. Only took 4 AA tablets so far, then chickened out! I have been keeping up with your advice on the forum but don’t have much energy to do all you do as regards exercise. Worrying 😕
Well I can assure you low carb works for most people. I have lost over 2st since going low carb at the end of year 1. Now going into year 4 and low carb just normal now.
Hi Poopadoop, thanks again for this link. More reading to do. Did you follow the advice to the letter to lose so much weight or could you sometimes be a "bit naughty"? Well done on losing the weight. I don't think I'd be able to do fasts as I used to and still do feel very faint if I skip eating. Do you do fasts? Thanks again.
I aimed for 40g of carbs but didn't deny myself a slice of bread in that 40g. I would say between 80 and 90% good on a weekly basis. So I might have a extra few grams on a Friday or Saturday. Or if I go out with a friend on a day like today I might have a small ice cream. You have to do it so you aren't miserable and can sustain it. Even cutting pasta, rice and most potatoes out of my diet made a big difference. I never fast beyond during the night. I have type 2 diabetes that since pred has had to be controlled by insulin. I darent fast as it's only been a couple of years and I still don't feel confident or experienced enough to start messing with something thats working. I have never been a things in moderation person, but have got to say I have found this really easy to do. I did use a book from diabetes UK that basically sets out the carb content of most food groups, and things like croissant and other not very good carbs. It helped me see in a strong visualisation how many carbs something has and made me make different choices. It has got no recipes....just pictures of foods in different portion sizes with carb and cal content. I will try and remember details!!
Hi JGBH - my understanding is that taking the Pred has a similar effect as Type 2 diabetes (blood sugar swings/sugar not being metabolised properly etc) so I've been looking for food advice for diabetics. I've got 'The 8 week blood sugar diet recipe book' - amazon.co.uk/8-Week-Blood-S... , partly because it's from the Michael Mosley camp and I trust his advice. I read his first 5:2 book six years ago and both my husband started following it and it's been brilliant for us. The low-carb thing has replaced 5:2 for now but I still do mini-fasts. I'm not following the 'blood sugar diet' religiously as I'm just trying to get into different eating habits, and I'm just trying not to put on weight. And I refuse to deny myself alcolhol! But looking at it I know I could shift some weight if I followed it to the letter. (Might need to at some point). Anyway it's got loads of easy/useful/realistic recipes as well as explaining clearly how it's supposed to work.
The other book was one I saw recommended on here - The Diabetes Weight Loss Cookbook - bookdepository.com/The-Diab... . It's a bit glossier and has some fancier recipes but those I've tried so far have been great (eg interesting versions of cauliflower rice, seed crackers, aubergine parmigiana...)
Also I keep a 'handy' Collins Gem 'GI - All you need to know' in my handbag, just to check on individual ingredients and quick advice on what to choose when eating out. I expect I won't need this once I remember the basics.
I've only been doing this for a month so I realised it's early days as regards Pred side effects, but so far I'm feeling healthier and happier for it. I'm really hoping not to get fat while on the Pred, but if nothing else I do think I'm doing my overall health a favour by decreasing carbs.
I hope that's helpful and that this (or something like it) does work for you. All the best -
Hi Robin, sorry to bother you again as I seem to be doing, but just thought I had bought one of those books on the Bookword site and it turns out it’s just a download. Site gets very critical reviews on trust pilot. People are saying it’s a a scam 🙁
Hi Robin, thank you for replying so promptly and giving me the information. Will look at those books. I need to do something because th preds have had a dreadful effect on my weight. I was losing weight (without trying) gradually but consistently before I was put on steroids, but am balloning now... I am small so no space between abdomen and stomach... so uncomfortable and unpleasant and do not know what to wear to feel comfortable and look presentable.
Oh no, I'm so sorry about the link to that Bookword site. It was a link that came up first when I searched and I was too much in a hurry to post it. I bought mine off Amazon but I'm not proud of that, but should have just posted that link instead. It's nof like me at all to not spot a scam. Huge apologies Rache. I wonder if I can go into my original post to delete/ replace the link? I will try. Thanks for telling me. 😒
Hi ebn49, don't worry. You can edit it out using the "more" button. lots of us click on things and don't realise what it is. I didn't know about it so it has informed me. 🌻
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