Fifteen months ago when I started Pred, my GP insisted I took Alendronic acid to avoid osteoporosis. I asked for a Dexa scan first, which he refused, so I did not take Alend. acid . Today he has again put pressure on me to accept this medication. When I mentioned Dexa scan again he agreed this time (so I'm happy about that) but made it clear that even if my result was good, he'd be persuading me to start the medication. Are there any statistics showing what percentage of women who are on steroids go on to develop osteoporosis, because he implied that it was completely inevitable. Having difficulty accepting that statement but happy to be proved wrong. I have been on Pred for 15 months & started at 20mg and am now on 4mg. I walk every day, have never had a fracture & am not underweight. I have had a slightly raised calcium level for the past 12 years but it never 'spikes'. Any advice gratefully received.
Alendronic acid or not?: Fifteen months ago when I... - PMRGCAuk
Alendronic acid or not?
I actually improved my t-score during fairly early days on pred on pred, between a first and second DXA scan. It is not considered best practice to prescribe osteoporosis medication as a "preventative". Much better to do things like I outline in my story. Others have also found a similar protocol helpful.
healthunlocked.com/pmrgcauk...
Thank you to yourself and all the other helpful responses to my post. I have also watched the suggested video which made excellent sense. I'll await result of my Dexa scan before making decisions but thanks again to you all. I'm so glad I have 'someone' to speak to!!
If the link isn't working (there have been occasional glitches on the site) you can find my story in the pinned posts, the FAQ post, under Bone Health. 
what is the direct link to your post?
In my first reply to Francesbarbara. I noticed it wasn't blue so I assume it's not a live link so I explained how to access it through the FAQ post.
I have just gone to that reply and tried again and it seems okay now.
Once you have the scan and get your scores (ask for them) bring them onto here, if necessary as you cannot work them out, just like me - then you make the decision, then visit the Royal Nat Osteo site.
In the meantime you really need to read the link Heron has posted for you.
Wow Francesbarbara! This could be me writing this post! I have gone through the exact same conversations as you re Alendronic Acid. My doctor, also, has at last agreed that I can have a dexa scan after me asking her and the rheumatologist several times and me refusing to take AA (I'm still waiting for the referral though) but she told me that I would still need to take AA regardless of the results. I have been on steroids for 16 months.I, too, would love to know if there are any statistics available, because both my doctor and the rheumatologist I saw also implied that I needed to protect my bones as it was inevitable that I would get osteoporosis.
This is in no way intended to influence any comment regarding AA and applies to my experience only. Almost 2 years ago I started on 60mg Pred' due to my G.P. reading in my medical history that I had recently been to see an eye specialist,the symptoms that I presented with were typically PMR but fair do's he played it safe.I also started AA,( no suggestion by my G.P. or anyone else that a Dexascan might be needed,) and continued with it for probably a few months or so,after that period I decided not to continue with it having read numerous articles suggesting it may not be needed.
Move forward to June/July of last year and a compression fracture of T4 plus further damage lower down my spine at L4 and L5 after a fall in my garden.
Suddenly I have my G.P. referring me to a Rheumatologist, the rheumy had numerous tests carried out including a Dexascan showing a score of-2.5 She also told me that I had Osteoporosis of the spine almost certainly due to the high steroid amount over a long period of time and not taking AA .(entirely my decision,)I struggled at the time to understand how such damage could occur so quickly and still do.
Along with many other people on this forum I have no idea as to the accuracy of the rheumy's conclusions nor do I fully understand the numbers but it seems my decision to stop taking AA may have been the wrong one.
You do need to protect your bones, there is no doubt about that, but medication is not always the only nor the best way - as you can see from the replies you've already seen on this thread. Some people will need medication, others manage another way, but we all have to do something. Some are lucky in that they start with good bones and happen to live in an area where they get all the nutrients they need to maintain their bone health from their diet. Others have to do as I did and supplement some of the nutrients missing from the industrialized food supply available. I also suggest that even those who take medication should also follow the nutrition and (as much as they are able) the exercise protocol - no side effects except perhaps generally improved health.
Me too. My GP said it was necessary for me to take AA. I did for about a year. Reading the threads on here I questioned AA and asked for a DEXA. Was refused then later I was given a referral. GP said reading results that I should take AA. Didn’t understand the results so asked for a copy . PMRpro explained them for me clearly. My results were not so bad to warrant AA. So I do not take it. I have a good diet and exercise. Waiting for 2nd DEXA at moment. Been referred just have to wait
I don’t know about figures but I am not on AA. After 3 years my dexascan showed very mild osteopenia and then after another year it showed my bone density to be normal.I take d3 with calcium and k2 and do as much walking as I can.
I'm pretty much the same Koalajane, only after my first dexa scan showed mild osteopenia my second showed it was a little worse (up to - 1.9), and like you I take those supplements and try to walk every day, but don't manage as many steps as you. Maybe I'm a little unlucky that my scores were worse this time around. I try to increase calcium in my diet. Any more suggestions?
Hi there. Unfortunately, my DEXA scan did show osteoporosis, but I half expected it to as I'd been osteopoenic pre prednisolone. Had it shown normal bone health I would absolutely have refused to start taking AA until such a time as was necessary. I personally would be very reluctant to take any medication as a preventative measure, particularly when it's such a toxic drug as AA. If good justification could be offered, only then would I consider it. I think you have more 'research' to do before you can make your decision though.
Reliable and trustworthy advice has already been given by others.
My GP has been trying to get me on Alendronic Acid since 2016. Every time we talk he mentions it as I am on long term steroids. My Dexascan is excellent. I think I have won each time but then the next time he brings it up again. Last time he did say it is always there if you want it!
Just as an aside, when I spoke with the Rheumatologist last week, he told me that it takes a year to get a 4% improvement in bone density (if I've remembered it correctly).
As you have PMR, not GCA, I assume all along you have been on a moderate to low dose of prednisone. People who have to take a larger dose for some months in order to preserve eyesight will be at higher risk of bone thinning, depending where they are starting from and a number of other factors.
Yes, I realise that I am one of those lucky enough to have been on a more moderate dose (now on 4mg for over 2 months) and thank you for making that point. You have (sadly) such wide experience, which is so helpful for others.
It is NOT completely inevitable. At my last dexascan in September, after over 11 years on pred, much of it at over 10mg/day, my bone density was only very slightly lower than it was after 3 months of pred at the start and still very much in a safe range.
Our local osteoporosis guru looked at the results and just said she had never seen results like that from someone on pred and to just keep doing what I had been doing. Now I'm not even taking calcium supplements, just making sure there is plenty in my diet, although I take 4000 IU vit D a day.
Generally, it is said that 40% of patients in pred develop loss of bone density. But 50% of the US population have osteoporosis. Hum ...
My rheumatologist also insisted I take AA and would accept no arguments. My dexascans had shown mild to moderate osteopenia for several years. My last scan showed osteoporosis in L1 of the lumber area, but interestingly elsewhere showed a significant improvement. So, until I have another scan which won't be for a year or so, I've decided not to take the AA. I've had my calcium and magnesium levels checked - both good. I will have a Vit D blood test next month. If this is also good I will continue with my current eating habits of low carbs, no sugar, full fats, chicken, veg, etc., and see how things pan out. All the best to you.....
If you have s long waiting list for your dexascan ( mine was 6-12 months) go private. It was only £110 but you will need a doctor's referall.
I have just booked a private dexascan after Rheumy said her guidelines meant it was only done every five years. The Spire wanted a referral, but The Nuffield said if you are over 60 it is not a requirement, so I went with them, and have one booked for early September. Getting a GP referral at the moment is pretty impossible, as they are not making themselves very available.
Dexascan intervals are every two years....
Thanks for the 'heads of' on the Nuffield. If mine doesn't come through soon, I'll try them and go privately.
I'm waiting to hear how long list is. If it is more than a month, I'll find Nuffield or similar. Thanks.
My doctor suggested alendronic acid, but after looking at the rather worrying side effects and the fact that it stays in the system for quite a long time, I decided to opt for calcium supplements and she has agreed to that. You don't have to follow my example, but I just thought that I should let you know.
Thank you bluepuddy. I so agree with what you have done but my only problem is that I have long term slightly raised calcium levels in blood and that seems to throw all the doctors when it comes to Vit D + Calcium + steroids. I get varying advice from doctors in the same practice - not helpful.
Have they done blood tests for parthyroid problems? High blood calcium levels are very often due to parathyroid issues - so that MUST be ruled out.
They did check Parthyroid Hormone and result was ' Increased PTH with borderline increased adjusted calcium.' Then checked Vit D level and result was 'slight insufficiency' . They decided to do nil and I was told I was one of the 5% of people with a (normal for them) raised calcium level which I've had for years. I could find myself in a question & argument situation day after day with medics......
Your PTH was raised? Sorry, that's NOT normal and it needs checking again.
I cannot take the calcium. I am in the normal range. I take Vitamin D and K2. Calcium comes from my diet
I am having a DEXA scan this afternoon. My GP referred me, at my request, in June. He had not done so when I was diagnosed in March. He said that the local scanner (Amersham UK) was broken so he didn't know how long I might have to wait. I had to go to Amersham hospital a couple of weeks ago for bloods and I spoke to the X-Ray dept to find out what was happening with the DEXA scanner. It had been fixed but she was now making appointments in October for people who had been referred in April! I asked if there was any alternative and was offered a scan at a private provider, on the NHS, in Milton Keynes (about an hour's drive away) which I snapped up. Result!
I took AA for a few months when it was handed out automatically when first diagnosed. Stopped as seemed to give me bone pain. Never had a dexascan in 6 years been on very low dose prednisolone. Seems to be no cut and dry answer. Hopefully attached a article I found interesting, apologies if everyone has seen it before. It’s over 15 years old. ard.bmj.com/content/64/2/176
I developed both osteoporosis and Diabetes type 2 as a result of my steroid treatment.
Francesdarbra, I am not a woman, but pay attention to the scan's results and act accordingly. Good LUCK!
I will do exactly that Michdonn - thanks for good wishes.
You are welcome get WELL!
I've been on steroids for 10 years now and don't have any problems with my bones according to DEXA scans. I used to take AdCal tablets for the first few years but not any more because they disagree with me (digestion and allergy problems) so now I'm relying on getting my calcium from dairy (cheese but not milk) and green leafy vegetables etc as well as what's in my daily multi-vitamin tablet. So I don't think it's inevitable and I am very wary about AA and whether it actually does anything useful or is a Big Pharma scam. I would like to see more evidence now that it has been around for a while. Given it can actually cause problems eg with teeth and jaw bones I think each person's case has to be weighed up individually. I don't smoke, rarely drink, have no family history of osteoporis and am a big-boned, far from skinny, gal. I've also never been offered it or advised to take it.
I’ve been on steroids 17 months now. I’ve Tapered down twice but have recently had to up it back to 5mg again.
I was told From the start that I must take AA and have done as I was told as I relied on the doctors to advise me.
When I had a dexa scan about a year ago I was told I had osteopenia, but when I asked my Gp what my bone density was she said she didn’t know!
I’ve never been referred to a rheumatologist, despite asking, and at times I feel I’m dealing with all this myself as I get told different things by different doctors at the surgery.
I was referred to a physio when I recently got pain in my shoulders and at the app today she said that my arm muscles were weak, despite me always exercising, and the discomfort was the result of the PMR. So I guess it’s just a case of keep on keeping on.
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