I Got the results of my DEXA bone scan, and I'm not sure if I need to be on Alendronate. (My rheumy prescribed it to me before these results came in, just saying "since you're going to be on steroids long term you need it.")
Can someone tell me if the numbers below warrant me being on Alendronate? I'm a 53-year old male. Currently on 25 mg pred.
What confuses me the most is that the radiologist says spine is fine but my femur BMD density is "moderately low." But when I look it up the numbers seems normal for a person my age, and then the radiologist recommends a follow up in two years. If he doesn't recommend seeing me for two years, I can't imagine I'm experiencing bone density loss from the two months I've been on pred.
And I'd rather not take it unless I have to, and I *thought* that I would only have to if I began showing prednisone-induced bone density loss.
I'm not even sure it was right of my rheumy to put me on it so soon.
Ok here are the results of the DEXA. Thank you anyone who can help me understand this.
The BMD measured at AP Spine L1-L4 is 1.161 g/cm2 with a T-score of -0.5 is normal. Fracture risk is low.
The BMD measured at Femur Total Left is 0.960 g/cm2 with a T-score of -1.0 is considered moderately low. Fracture risk is moderate.
The BMD measured at Femur Total Right is 0.893 g/cm2 with a T-score of -1.4 is considered moderately low. Fracture risk is moderate.
The FRAX ten-year probability of major osteoporotic fracture is 4.6% and hip fracture is 0.4%.
I must admit if they were my Dexascan results I would think twice about taking a bisphosphonate, but I am probably not the right person to advise! You do not have osteoporosis. I have been fighting my GP for a long time as every time I talk to him he says I should take AA as I am on long term steroids. The fact that my Dexascan is brilliant does not seem to matter. If I had osteoporosis that would be a different matter, I might consider it.
If you are happy to take Alendronic Acid that is great. I worked for the pharmaceutical industry for thirty years so I suppose I have become somewhat cynical!!
Not sure it’s necessary- yes one reading shows osteopenia- but that doesn’t mean it will become osteoporosis. I would be accepting a Calcium/VitaminD supplement which is usually prescribed alongside Pred. And add in a VitK2 supplement to direct calcium to bones.
There is plenty of info in FAQs - and particular on how HeronNS manages her ‘bones’ and I’m sure she’ll be along to give extra advice shortly -
PS - I took AA for 4 years with no issues when I was on Pred for my GCA, but have been off it for 7 years - although still on supplements as suggested at last DEXA scan….. in 2019.
Family/and personal reasons made me more susceptible to osteoporosis which is why I took it, but my general view is why add in another drug unless it is essential.
Thank you. I wish I had time to read every old post on this forum. I could probably find all my answers without having to ask the same questions everyone else asks.
One thing I find most interesting about this forum is that everyone here seems so intelligent and motivated. Perhaps it's self-selecting. I mean, if you're here asking and answering questions that means you must be intelligent and motivating. But I am wondering if this disease tends to affect a certain type of person.
This disease hit me literally at the top of my career. I founded a nonprofit here in the states 20 years ago, and over the last three years it has grown exponentially. When I got my covid booster shot three months ago today (to the day), I was literally working 60-80 hour weeks. Not healthy! I'm a classic over-achiever and I don't think I realized the stress I was under.
(Positive stress when good things are happening is less noticeable than negative stress... like when your nonprofit starts making $4 million a year, you are asked to be an advisor to the FDA and CDC, and you suddenly find yourself managing eight employees.)
In hindsight I now realize I shouldn't have gotten that covid booster while I was under so much stress. But if there's one good thing that has happened (and even my wife recognizes it), it's that from day one when I could not get out of bed and went to the emergency room, I made a decision not to work one minute more than 40 hours per week. I stop work at 5pm now and do not look at my work emails or answer the phone. This has required me to let go emotionally in a lot of ways in what happens to my nonprofit. But that's good. I was too invested. It might even have improved my marriage, as we now spend every evening together, playing Scrabble, watching TV and relaxing (imagine me relaxing. lol) .
Perhaps one day I will thank PMR for all of this. Maybe it's the enemy that teaches.
But I am wondering if this disease tends to affect a certain type of person.
Has been said many a time.... not sure we are all in the same league though - but different things motivate different people.
PMR & GCA are levellers in lots of ways, and like many illnesses do make you re-evaluate your lifestyle - and certainly not as drastic as cancer or a heart attack - so maybe not a bad thing
Just a couple of light-hearted looks at those that succumb---
...and never worry about asking a question - it will always help others as much as you... and we don't mind repeating the answers...if it help's one person, that's a good enough reason...
Like piglette - if those were my figures, you wouldn't catch me taking AA!
A t-score of -1.0 or better is normal. -1.1 is osteopenia, -2.5 is where they define osteoporosis. Normally, a score better than -1,6 is considered to only require calcium and vit D supplementation and monitoring - even with pred and at your age.
- Bisphosphonate with calcium and vitamin D supplementation (because higher cumulative steroid dose is likely)
You are not over 65 and your scores are better than -1.5 - you need a good dietary calcium and a good vit D supplement and keep exercising as much as you can.
I was 56 when I started pred at 15mg, My t-scores were similar to yours, I have rarely been below 10mg and 2 years ago my t-scores were only slightly worse. I did not take AA.
Loss of bone density with pred at PMR doses is NOT inevitable - come to that, I have friends who had GCA who also did not take AA and whose bone density remained good.
HeronNS has written her story of not taking bisphosphonates:
Dietary calcium is better than tablets, you need a decent amount of vit D, I take 4000 IU per day as otherwise my blood level just slowly falls to a depleted level. Heron and some others take vit K.
Australia suggests 180 mcg Vitamin K2-mk7. My capsules are 100 mcg so I take two, one in the morning, one in the evening. As far as I know no other country has official RDA for this vitamin yet.
I already have acid reflux and esophageal spasms and when I take AA, it exacerbates this and terrible gastro pains. I've tried it, told the Rheumy I can't tolerate it, but still she wants me to take it. I have not yet. I have the pill you take daily and the pill you take weekly and still makes me sick. I realize it's supposed to "prevent' osteoporosis, but how much do we add to our pain by taking so many "anti"-type pills? So there you have it.
Print it out if necessary, highlight in fluorescent marker and shove it under her nose. I'd get the GP onside first for a bit of backing. She is increasing your risk of more serious things than osteoporosis and she needs educating.
Indeed she dies Pro but I cannot reach her. The unreachable star. Have no GP at this time. So I shall remain AA free until I get a follow-up appt with her...should that actually occur. 4 months from Feb 8 possibly. That is when I saw her after the TA biopsy. So many contraindications though. Thank you for this link and if given the chance I will shove it under her nose and I'm being polite here.
I have been on steroids for 10 yrs starting at 20 mgs and the rest of the time at 6 and below . My Dexta scan showed no osteopenia and low # risk . My rheumatologist wants me to take AA but I am not going to at moment and see what my 2 yr follow up says I am 66. I have however decided to take the calcium supplement she suggested. But I have brought vit K9 to take alongside. This vit helps the calcium to settle to the bones and not in the soft tissues, like the heart muscle.
I'm almost in the same boat, but my 2-year-old t-scores are a bit worse than yours -- the worst one being -1.9. I have a new Dexascan scheduled for tomorrow to see what's happened between then and now. I have been on high doses of PRED since AUG 2022, so we'll see.
My rheumy also put me on Alendronate, but not until I had already tapered from 60 MG to 20 MG, which makes no sense to me. I took it for 3 weeks and didn't like how I was feeling, so I stopped it until I get the results of the Dexascan.
Like your Rheumy, I was told that I need to take the Alendronate (or something like it) no matter what the Dexascan results will show. I challenged him on that and he told me he was merely following medical guidelines.
If my Dexascan results show aggressive deterioration of my bones (bad t-scores) then I'll consider going back to the Alendronate -- but not until I read about what HeronNS has done.
Thank you everyone. I have taken three pills so far (once a week), but I think I will stop.
You know I had to request the DEXA scan. My rheumy wasn't even going to do it. Then when she got the results she did not tell me I could stop the Alendronate.
I am learning that a lot of doctors don't know much, even within their own specialties. It's like all they do is read the latest "guidelines" and don't bother to go deeper.
How many rheumy's read this forum, for example? In just a matter of days here I have learned so much.
Many of us would love to have those readings! For some reason the greatest effect on the bones appears to be in the first few months of taking pred, although I've not seen an explanation. Possibly because that's when our dose is usually at its highest? They do say that longterm pred causes greater problems over time, but I have to say I think that's more likely only if a person does nothing to preserve bone health. There is so much we can do to maintain and even improve our bones (even with quite worrying readings, which yours are not) that there seems no reason for you to start taking any osteoporosis medication.
It's quite disturbing when doctors prescribe fairly toxic drugs "just in case". There's a time when they may be needed, but far less often than many doctors seem to think.
My story, mentioned by DorsetLady, may give you some ideas about steps you can take to keep your bones strong.
I am going to get some calcium hydroxyapatite now and also the Vitamin K2 as MK-7. I have already been doing everything I can in terms of diet and supplements, but I did not know about the "hydroxyapatite" and the "MK-7."
I'm luckier than most because I think because I was already on a health Keto diet for years before I got PMR, so I have none of the hunger and weight gain issues other people seem to get with pred. I eat so many vegetables every day, a majority of which are greens. I am consistent with daily broccoli, asparagus, celery, and kale every day. Spring mix lettuce a few days a week. (Probably should switch to baby spinach.)
Since my PMR I have added poppy seeds, sesame seeds, cheese and yogurt. When I add up my calcium from food it comes to about 1,000mg per day. So I only supplement with 300mg calcium powder. I will switch to the hydroxyapatite version.
I have been taking 2,000 units of Vit D3 and 10mcg of K2. Also 300mg magnesium. And every other day I do a slow release 900mg potassium. (not sure how important the potassium is).
Thank you again. I have learned from you that bone density while on pred can be controlled through diet, and I am the kind of patient that can easily adjust my diet.
Do you get your potassium checked from time to time? Potassium is a bit dodgy as a supplement, high potassium is quite dangerous so it does pay to check.
Potassium should only be prescribed by a doctor. Thank you PMRpro for noting the potential danger of too much via supplement.
If your calcium supplement is working fine for you, don't need to try to switch. It wasn't that easy to find and I continue it to this day really only because of laziness as my pred dose is so low and has been for a long time. (My supplement contains a lot of bone-friendly micronutrients in fairly low doses so it's a bit of insurance against maybe not getting enough of something in my diet.) Calcium carbonate is harder to absorb than other kinds, and calcium citrate, which is readily available, generally better tolerated. But I agree that you should be taking a larger dose of Vitamin K2. Australia is the only place which seems to have RDA for K2 and they suggest 180 mcg per day. My capsules are 100 mcg each, so I take one in the morning and one at suppertime. It's sourced from natto made from organic (non-GMO) soy.
Like many on here, I think you have pretty good bone health and would not be entertaining AA at this point. Maybe skip the potassium but your diet and supplements seem pretty good. It's good to read you have changed your quality of life, albeit in unfortunate circumstances, but you've realised at a good age to start enjoying your life.
I have worked long hours for 40 years and the crazy thing I've found is I don't miss any of it.
Thanks. I think I actually *will* miss my work if I have to give it all up. I've already given up half of it. But I get to replace that with family and gardening and nature outings. So that's even better!
I don't know if this point has been made before. I've seen two dentists about having a tooth implant & both said they wouldn't touch me because I've been on AA, a biophosphanate. One said if I was to have an extraction it should be done in hospital. Anybody else been told this?
It seems a common response from dentists in the UK and has been repeatedly discussed on the forum over the years.
The PILs for bisphosphonates all say that a dental check should be undertaken BEFORE starting them and any expected invasive dental work completed before initiating the treatment. That will be anything involving extractions. As far as I can gather, few doctors ever tell their patients this when handing out the prescription.
The second article gives great detail - and when you look at their recommendations it is obvious why dentists aren't enthusiastic about taking on such a patient. And also why the manufacturers don't make much of the potential effects.
It is rare - but it happens and far more common is that dentists point blank refuse to treat patients on bisphiosphonates. There is no reason to refuse fillings and so on but extractions are another matter.
Thank you. None of the Rheumatologists I have seen have mentioned this. If I went to a dentist without knowing this & not mentioning it, then having an extraction with consequences mentioned in the articles I'd be suing someone!
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