Hello I was diagnosed with PMR and GCA in November 2018 and have been slowly tapering my prednisone from 60 mg to 4.5 mg currently. I was prescribed AA and vit D/K at the same time. As I have been on AA for 5 years I asked for a dexa scan so that hopefully I could have a holiday from AA. However much to my surprise and disappointment the results came back as osteoporosis in my spine and osteopenia in my left hip. A scan 2 years previously had shown osteopenia in both spine and left hip. My current T scores are: spine -2.5, left hip neck -2.4, left hip total -1.8. I am really upset and very frightened by this diagnosis at 67 years of age and as I have already been taking the appropriate medication. Any thoughts or guidance greatfully received. Many thanks. X
osteoporosis diagnosis : Hello I was diagnosed with... - PMRGCAuk
osteoporosis diagnosis
You have been doing all you can, unfortunately genetics also plays a role. I was under the impression that you shouldn’t be on AA ( Alendronic Acid) for more than a 5 year stretch - please check. Years ago Heron did a wonderful post about improving her bone density/ health naturally. I have a feeling it was put on FAQs. It was the stuff about Calcium vit K vit D weight bearing exercise and much more. Have a look for it. DorsetLady may have it in her amazing filing system or Heron may see this. The point is, it can be improved naturally. Don’t despair!
Thank you so much for your quick and helpfully reassuring reply I will certainly look at Heron’s post. I went to the GP expecting to be taken off AA after 5 years however the hospital bone scan dept have recommended I remain on it for another 2 years and have a follow up scan. Thank you again x
I felt as if I wrote your piece. I just asked to get off of the Fosamax. Right now I still have osteopenia. I guess I will have to be as diligent as I can. We can do so much and then genetics takes over. Only the best to you. Don’t despair. Try to enjoy the holiday 😍
There is no need to panic and be frightened - the vast majority of people who break a bone have normal bone density! The fear the doctors have is of a broken hip in older patients - but in fact the incidence was already going down before AA became the drug of the moment.
There are many things you can do to reduce the risk - and they are things we should be doing anyway really. Banish dark corners - good lighting on stairs or anywhere you might risk tripping and falling, remove loose rugs and trailing cables, make sure any pets do not weave around your ankles, especially on stairs where you also need good handrails. If you have tiled floors make sure they aren't wet when you walk on them - my much younger and VERY fit neighbour had a horrendous fall on a wet tiled floor. It is no longer tiled in her kitchen!! Put the lights on when you get up at night - that was what caused my husband to fall.
It is also important to do exercises to improve your balance and maintain muscle tone - and also to take vit D to keep your blood level good and drink plenty of water so you aren't dehydrated. Those are very simple measures that have been proven to reduce falls.
This a far more detailed article than my outline so have a good read.
nia.nih.gov/health/falls-an...
Not sure what makes them think things will change in the next 2 years, if you have lost bone density in the last 5 years while on AA, I doubt that will magically change in the next 2 years. All that can be expected with AA is that the bone density is maintained, it very rarely increases, other drugs do that better.
Thank you so much PMRpro that is really helpful and reassuring and I will certainly read the article. Your advice is greatly appreciated. X
And I forgot to include the most important item, especially at this time of year! NO climbing on chairs or stools to reach something down from a shelf!!!! Only ever use a proper, stable stepstool and if you absolutely must! If you can rearrange things to get all the things you use a lot within reach - all the better,
Bless you thank you - sound advice and a good reminder xx
Your results are not really as dire as you fear, (-2.5 is at the borderline of penia/porosis) although a bit discouraging given the AA you have been taking. Perhaps it would have been lower if you hadnt taken it?? Have you had a look at the Royal Osteoporosis Society website, theres lots of stuff on it for you to talk to your GP about? Perhaps tot up exactly how much Calcium etc etc you are taking per day, 365d/365d, as per advice above.
Thank you for your reply x yes, I have looked at the Royal Osteoporosis Society website and spoken to a nurse there too and she said, like you, that without AA it could have been worse. I’m doing resistance exercises and dancing to help. Thank you I will check my calcium levels as I don’t eat cheese or much dairy. Thank you again x
When I added my Ca intake up I was surprised to see it was only about 700/800mgs per day 'cos I restrict dairy due to cholesterol .
Thank you - good advice, more yoghurt for me I think! X
Were you put onto a calcium and vit D supplement alongside the AA?
Yes PMRpro, I was automatically put on AA, kalcipos and lansoprazole at the same time as the prednisonlone in November 2018. I stopped taking lansoprazole a few months as I found I didn’t need them and haven’t had stomach issues. Thank you as always for your wise counsel x
If you hadn't been, that might have accounted for the AA not having worked.
Unless you can take Cacit, sadly i can only tolerate1/4 tab per day??
I’m currently taking Kalipos under prescription so will look into cacit and perhaps ask pharmacist. Thank you x
This is ok, its a Calcium plus Vit D tablet tab so if you are taking one you get 500mgs Calcium or 1000mgs if the prescription is for 2 a day. No point in swapping to Cacit which is just Calcium, no vit D. Aim is to take at least 1200mgs per day in total, ie tabs plus diet.
I have just had my first DEXA so I have had my nose in the osteoporosis prevention websites!!
Hope all comes back ok - let me know x
I was diagnosed with ostoparosis at the age of 36 when i fractured my pelvis in 2 places like you I was afraid and after more fracture than i care to rember since somtimes that fear rears its ugly head to this day
Oh dear I’m so sorry to hear this - you were so young to be diagnosed with this and clearly have been through such a lot. Has anything helped ? X
I ve had most supplements at one time or anouther but my bone score is 0 so not much will improve it I also have a cruberling spine with fractured vertebrae and a trapped nerve as well i am now on high strenth pain meds including fentanal patches which is 75 times stronger than morphine plus liquid morphine to help with the pain
Oh this sounds awful. Sending you love and hope for good health and good days. Bless you
oh dear I’m so sorry to hear this - it absolutely sounds awful for you. Take care. X
Xx
My scan showed lower scores this time, and since I have artificial hips, they can't judge that part of the body, but I did break my wrist a couple of years ago when...guess what, a pit bull knocked me down! Anyway, the opinion seems to be that I should switch to a different drug -- maybe Prolia, or there is a new one that I would take for a year first. I'm going to do it because despite physical therapy and exercise, the score is going down. My gp is sending me to an endocrinologist for an opinion as to which drug -- I see her this coming week. Meanwhile, as others are telling you, calcium, Vit K2 and D, and exercise, and not too much caffeine or alcohol, or foods that inhibit calcium absorption, especially around the time you take your calcium supplement -- there's lots on the internet about this.
Bless you thank you for your reply you are clearly having an awful time with this and I’m so sorry. I do hope that your appointment with the endocrinologist is helpful this week. Do let me know how you get on. Take care x
As PMRpro says "Don't panic!!
I have several fractures in my thoracic spine and all my dexa scans have been normal apart from the last one showing osteopenia in one hip. I had a stress fracture in the opposit one!
My mother-in-law lived to be 98 with osteoporosis and never broke a bone!
I have had three zoledronic acid infusions and am waiting for an appointment for another dexa scan.
We do the best we can then it seems to be in the lap of the gods (or whatever!)
Virtual hugs and best wishes for Christmas and the New Year. Kate x
Thank you dear Kate for your kind and supportive reply which is very reassuring. I do hope your next dexa scan doesn’t show deterioration. Do keep me updated. Take care and thank you again for your thoughtful message. Sending love and a cwtch from Wales. Xx
Hello. It is scary, isn't it. I hope you find the comments of others reassuring. I was taking Alendronic acid, then Risendronate sodium ( another variety which didn't affect my tummy so much) for 5 years. I got down to 0.5 mg prednidolone and had a GCA and PMR flare last Christmas necessitating 60 mg. The rheumatologist put me on Risendronate again. When I questioned this she said "In my opinion, it's OK for up to 10 years". Maybe it wouldn't be OK for everyone. I was 63 at the time.
Oh bless you what a roller coaster ride we experience with these conditions. The support and understanding of others like yourself is invaluable. Thank you so much. I think I was particularly panicked and disappointed as I had been taking the appropriate medication for 5 years. Reassuring to know it’s ok to continue with it. Thank you. Take care of yourself and I sincerely hope that this Christmas is a more manageable and better one for you xx
Thank you! I have 5 married children and 19 grandchildren. There will be 17 of us here over 10 days but a max of 12 on any day. I do all I can in advance but it's a busy time! Lovely too. Happy Christmas and a healthy New year to you!
Oh gosh that does sound busy but amazing and such fun. Do accept any offers of help won’t you. Take care. Xx 😘
Hope you are doing plenty of delegating....now and then!
Sorry to hear of your scan results Fishponds, and can only reiterate what some others have said. The correlation between Dexa results and fracture risk is not particularly strong and there are other more significant risk factors including balance ability and risk environment (trip hazards etc) which others have made positive suggestions for.
Just a quick check though - the Dexa scan results (in terms of T-scores) are strictly only valid for white Caucasian ethnicity. I note your bio does not include your ethnicity, but if you are of south or (particularly) south east asian ethnicity there may be more reassurance available.
Bless you thank you for your kind and reassuring post. I am white Caucasian. As I have been taking the appropriate medication for 5 years I feel that it is now down to me to minimise risk of falls and to do everything I can to improve balance, muscle strength etc. This forum and members like yourself are an amazing support thank you xx
I have been interested reading all the replies to your post. GP has contacted me saying my recent bone density scan shows "slight" thinning of the bones (she didnt give me the figures) and I have an appointment at the metabolic bone clinic in Gobowen on January 3rd to discuss treatment, which I must admit I am extremely apprehensive about as the GP mentioned regular infusions,
I haven't taken Alendronic Acid as I have been waiting over 12 months for dental treatment. The GP took me off calcium as my blood calcium levels were too high, so I just take a daily Vitamin D capsule. I avoid too much dairy as that causes me stomach problems, I have oatmilk on cereal, a small piece of lactofree cheese a day and probably 2 or 3 Greek yogourts a week. I have one decaff coffee a day and no alcohol.
I am now doing an exercise class for seniors twice a week in the hope of being able to get around without my walking frame eventually. I've been tapering steroids slowly, now taking 6 1/2 mg daily and planning to reduce to 6mg after Christmas.
Not sure what else I can do to help myself.
The first thing is to ask for actual numbers - almost all of us on this forum have "slight thinning" of our bones, officially classed as osteopenia which is a natural progression of bone density with age. However - that is by no means a pathological condition or that it needs bisphosphonates to "treat" it. Did your GP investigate anything else with your high blood calcium level? What was your vit D level, do you know?
Thank you for your reply.
No I was just told to stop Calcium, and I don't know the Vitamin D level either. I'm supposed to be getting a form to go for blood tests after Christmas. GP used to do home visits but it's phone calls now. will have to ask for more information with the next results, instead of just accepting the receptionist telling me everything is satisfactory.
Good plan. I wish you all the very best. Take care x
High calcium and low vit D is a pointer towards parathyroid problems which can cause loss of bone density - a very common cause in fact. Why do they do half a job? Stopping the calcium was the start but it needed following up properly. Just in case ...
I have had an ultrasound on the thyroid recently, I hadn't realised that was connected to calcium levels. the operator said there were a couple of small nodules but nothing to concern him. I must start asking more questions about the reasons for various tests instead of blindly accepting what I'm told.
It is easy for me - I worked in clinical biochemistry and did physiology for my degree so I always think that way. Other women think/talk about nails, shoes and clothes ...
Oh dear bless you it sounds as though you are already being very careful and doing what you can. I will be very interested to hear what they say at the metabolic bone clinic in January so please let me know. I really hope you get some clarity and reassurance. Take care of yourself. Big hug xx
An update on my visit to Metabolic clinic yesterday, Osteoporosis has been confirmed, my T score from Dexascan is minus 2.8 in left hip, overall minus 3.3.( I hoped it would be osteopoenia.) Apparently I have fractures around T11 and 12 and L1 and 2, no idea how they happened as I haven't had a fall in recent years, I was told the T11 and 12 could be caused by something as simple as coughing or sneezing. The only treatment option available to me, long term, is a 6 monthly injection of 60mg of Denosumab. This is because of poor kidney function. I had blood tests yesterday, and first injection should be in the next few weeks back at Gobowen. Our practice in Wrexham does not administer this injection. Denosumab does not help with pain though, which is disappointing, and I was advised to continue with exercise classes.
Oh bless you I’m sure that was all hard to hear and scary too especially as you were expecting a diagnosis of osteopenia. I’m pleased to hear that they have a plan for treatment and I do hope it helps and halts any further deterioration. Incredible and scary how easily you had those fractures. Good that you can continue with your exercise classes. I’m sure you’re still getting your head around all this so I send you a big but gentle virtual hug from South Wales to North Wales xx
Osteoporosis in and of itself isn't painful, it is when you develop tiny fractures that it hurts. You don't have to fall - just the weight of the bones of the spine can lead to the bone collapsing.
I do find it a rather scary condition x
I suppose it is rather - you worry about breaking something. SO all the more reason to take ALL the precautions you can - good lighting especially on stairs and steps, remove trip hazards and loose rugs for a start. Never get up in the night and stumble around in the dark - put the light on! And above all - not scrambling up on chairs to reach things, put things you need often handy and if you MUST reach higher, get a stable solid step stool.
This is a really good article about what to look at.
nia.nih.gov/health/falls-an...
And on top of that, make sure your medications are all well adjusted so you don't have dizzy turns, make sure you are well hydrated, It is proven that good vit D levels reduce the risk of falls. Look for local classes to improve muscle tone and balance - tai chi is ideal. And if you are wobbly on your feet when out and about, get a walking stick or, even better, a rollator.
Thank you so much PMR Ppro such helpful advice as always. This community is so supportive and informative from those who know and understand which is brilliant. Xx
Hi - I have been on a similar journey to yours starting at 60. I got a dexa scan at the beginning and another one a few months ago that thankfully came back "normal" although I don't have the figures. Would I be right in thinking you are in the US? I ask because I was recommended supplementing with Boron @ 30mg (started on 15 and built) it comes from Hakala Labs in the US and unfortunately they don't ship to the UK anymore. At the first scan I was advised to eat high in calcium including Ice Cream! Not great for the waist line but I love the excuse!
PS I didn't like the look of the various prescription offers like AA so have stuck to Boron and lots of dairy.
Bless you - no I’m in the UK, Wales not US. I think I must up my dairy a bit more although I do have cereal and yoghurts daily already. I really hope your dexa scan remain normal and like me you can continue your journey down from 60mg prednisolone as smoothly as possible. Take care x
My diagnosis of osteoporosis is very similar to yours. Osteopoenia from Dexascan last December and now osteoporosis, but no new scan, until I pushed for one in November past. Rheumy fudged it. Anyway, I was unable to tolerate AA and ended up having a Zolendronic Acid infusion this October. I have taken Vitamin D3, 4000mg and K2, calcium and as much weight bearing exercise as is possible, religiously since PMR diagnosis in Jan. 2022. In spite of all, I have ended up with fractures in 9 vertebrae. Rhemy said it is probably genetics. To my knowledge, no one in the family for a couple of generations, has this or arthritis. Do you take any ppi's like Omeprazole? These are known to cause bone brittleness. Unsure weather the infusion has kicked in as one fracture is very recent. I go for a MRI this week to see if I will be having more vertebroplasties. Have had 2 vertebrae done so far. We can only do what we can do. Wishing you all the best. ~ Deb
Oh my goodness you really are going through the milk with this I’m so terribly sorry and feel bad complaining about my problem. I was automatically prescribed lansoprazole at the same time as prednisolone, alendronic acid and Kalipos. I had read a few unfavourable reports about PPI s so stopped taking lansoprazole in September this year (after taking them for 4 yrs 10 mths) with no ill effects. Thank you for your reply. Take care of yourself and I do hope the MRI doesn’t highlight any issues. Big hug xx
Merely arming you with extra information, which I was NOT given from my Rheumy. Did not interpret your post as complaining at all. It's the only way to get to the bottom of things. Positive vibes to you Fishponds.
Thank you so much xx
One of the simpliest things you can do to potentially help stop bone loss is just change the timing and amount of Calcium you take.
Most calcium supplements come in 600 mg pills but the max amount of calcium the body can absorb at one time is around 500 mg. Additionally, calcium and magnesium are both needed for healthy bones and calcium and magnesium compete for uptake and calcium wins this battle so if you are taking large doses of calcium you might be limiting the amount of magnesium your body gets. Lastly, your body repairs at night so you shouldn't go to bed without having some calcium in your system.
Once I learned those things, I changed my calcium supplements to pills that contain no more than 200 MG of calcium. I aim for 1200 - 1500 MG of calcium per day (approximately 1/2 from diet and 1/2 from supplements) and I try to break it up into smaller amounts throughout the day. I never exercise without having calcium in my system and the last thing I take before going to bed is a calcium supplement (I would drink a glass of milk but that would add another middle of the night bathroom break so...). Studies show that women who take calcium at night have lower PTH levels in the morning.
Thank you that is really helpful and interesting. The prescribed kalcipos I take are 500 mg and I take an over the counter magnesium supplement which is 250 mg. What would be the optimum time of day for me to take these do you think and presumably with space in between them. Do I need to take more ? I think I do need to up my calcium intake as I eat little dairy foods in particular. Thank you so much.
I’m not familiar with kalcipos so I looked it up and from what I found kalcipos is calcium carbonate. If it is prescribed, I recommend talking with your doctor about when it should be taken.
From what I’ve read most ppl take either calcium carbonate or calcium citrate supplements. Here’s a link to give you more info about calcium, specifically calcium carbonate vs calcium citrate. health.harvard.edu/nutritio...
I can’t tell you exactly when to take your supplements but I will share with you what I do.
I actually take 2 different calcium supplements, Jarrows Bone Up and a generic form of Citracal Petites. One capsule of the Jarrows Bone Up contains 166.65 mg of calcium from microcrystalline hydroxyapitate, which some say is the most bioavailable form of calcium, and it also contains other vitamins and minerals. Regarding the calcium citrate I take, each pill contains 200 mg of calcium citrate and Vitamin D3.
Usually starting around 10pm, I take 1 Jarrows Bone-up capsule, and about an hour later I take another Jarrows Bone-up capsule, and then anytime between 12:30 a.m. and 3:30 a.m. I take 1 generic Citracal Petite and 100 mg of Magnesium Citrate—so all of my calcium supplements are taken at night and between the 3 calcium pills/capsules that I take, I get 533.33 mg of calcium.
The rest of my calcium I get comes from my diet. I drink milk and eat cheese or yogurt everyday. I don’t rely on calcium from non- dairy sources because it’s almost impossible to get more than 50 mg of calcium from vegetables at one clip—I’m never going to eat four cups of broccoli at one time.
I have a glass of milk a couple of hours after I get up in the morning and will often have a second cup in the afternoon and I also include cheese, yogurt, and kefir for n my diet so I know I’m covered when it comes to getting the required amount of calcium.
The other supplements I take, other than the Jarrows Bone Up and generic Citracal Petites, are
- Magnesium Citrate 100 MG twice a day (one in the afternoon and one with my late night 200 mg calcium citrate pill).
- Boron 3 mg
- D3, 1000 IU
- Fish Oil
- Garlic 1000 mg
- L-Lysine 500 mg
and I currently alternate daily between 2 different vitamin K supplements: one is vitamin K-2 (200 mcg MK7) w/ coconut oil and the other is Life Extension Super K which contains 1500 mcg K1, 1000 mcg K2 (MK-4) and 100 mcg K2 (MK7).
Also, regarding your T-scores, I was diagnosed w/ osteoporosis at age 50, in 2019. At that time my total lumbar T-score was -3.9 and my left and right hips were both around -3.0. So, from where I stand, your numbers look great. I’ve had several DEXAs since and if you check out my profile you’ll find a link to all of my DEXA results including my 12/14/23 DEXA (I just posted those numbers yesterday along w/ a bit of a rant because once again I’m having to “fight” with the imaging center to get my full DEXA report—it’s the 3rd time I’ve been through this). Note, I don’t have any fragility fractures and in January 2022, I joined a gym and I go 3 times a week (I leg press 290 lbs regularly and sometimes as much 415 lbs—and I’m a not big, 4’11” 108 lbs). So don’t let your numbers or your doctors freak you out.
If you aren’t getting enough calcium daily, you will continue to lose bone. Probably the single biggest step you can take is to make sure that you get the required amnt of calcium daily and take it in smaller “doses” so your body can absorb more of it and as stated in my first reply, take calcium before you go to bed to lower your fasting (overnight) PTH levels.
Thank you so very much for such a helpful, reassuring and comprehensive reply which I very much appreciate. I will certainly look into the supplements you mentioned and revise when I take the calcium supplement too. I’m so sorry that you are having frustrations getting clear results - it sounds an unnecessary battle for you. You certainly sound as though you are doing everything you can and I’m very impressed by your gym activity. I am doing exercises at home recommended by the Royal Osteoporosis Society and I go to a dance class so I’m doing my bit however perhaps need to up my game a little whilst still being careful to manage my PMR. Thank you again and take care x
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