Loss of Bone density

[Strelitzia]

I have just received a low bone density diagnosis due to the 8 months of prednisone, I suppose. I am devastated as I have followed all the recommendations for diet, pills, including alendronate, and do numerous weight bearing activities. Can bone density ever improve naturally? Or is this forever?

[Sophiestree]

Sorry to hear this. I know how upsetting that result can be. Had you had a Dexa scan before you started pred so you could compare the figures. What were your results? Have you been offered anything?

[Strelitzia in reply to Sophiestree]

Thank you. This is my only bone scan, so nothing to compare. I will have to ask for more details. I can message my rheumatologist, then I will hear what his recommendations are. Meanwhile I worry!!

[Sophiestree in reply to Strelitzia]

I understand, but try not to worry until you know the details. If you have never had a scan before, as PMRpro says, it may not be entirely due to the pred. You need to know your scores really before you can make decisions going forward.

[PMRpro Ambassador]

When did you have your dexascans? It would be unusual to have them only 8 months apart so how can you be sure it is the pred? It may already have been low before pred. What are your t-scores? Have you been told you have osteopenia or osteoporosis? Osteopenia isn't always anything to worry about - it is a matter of degree.

If you have lost bone density while on alendronate (alendronic acid) then maybe you need something else with a greater effect. And maybe some thought about whether this is only the pred - or not even the pred.

[Strelitzia in reply to PMRpro]

Thank you. This is the only bone scan I have had so there is nothing to compare. I will ask for more details as I just received a next day email with the message “ low bone density” with a follow up conversation to come. Now I will use your questions……

[Sophiestree in reply to Strelitzia]

That understandably is an alarming email heading. They perhaps might like to re-think how they pose these things to their patients.

[PMRpro Ambassador in reply to Strelitzia]

What appalling patient relations!! And I'd tell them. Very clearly ...

[Koalajane]

Do you take d3/calcium plus k2

[Strelitzia in reply to Koalajane]

Thank you. I will look into adding K2.

[fmkkm]

Hi,What was the diagnosis, osteoporosis or osteopenia? When was your previous bone scan?

[Kendrew]

When I started taking prednisolone just over 3yrs ago, my rheumatologist wanted me on Alendronic Acid as a precautionary measure as I knew I was already in the osteopenic range. I refused without a DEXA scan which unfortunately showed I'd progressed into the osteoporotic range.

I've been on AA for 3yrs and my recent DEXA scan showed a really significant improvement in both the femoral neck and lumbar spine. So much so that the specialist almost doubted the degree of improvement.

I told him that I'd taken several measures that I'd hoped might compliment the effects of the AA and these were as follows:-

- I ate a calcium rich diet

- took Vit.D3 supplements

- engaged in regular, daily weight bearing & low impact exercise

- engaged in daily yoga for osteoporosis

It may just be of course that my bones simply responded well to the biphosphonates but I don't believe that they alone procured such a good result. I do feel those other strategies definitely contributed.

I saw a new rheumatologist yesterday who carried out something called a FRAX test. This calculates your fracture risk from an array of data put into a 'program'.

Based on my dexa scan results and other significant details, my risk was deemed now to be low to moderate. As a result of this, the rheumatologist agreed to take me off the AA, with another DEXA scan in 2yrs and some appropriate monitoring in between times.

I feel very comfortable with this decision and will continue to work hard at doing all I can to maintain healthy bones.

I don't know whether I'll be able to maintain or even improve upon my current bone health, but I'm definitely going to try and I'm an optimist, so fingers crossed. 🤞

[Strelitzia in reply to Kendrew]

Thank you. That gives me hope! I am on AA and am very pro active about doing all the right things for my bones

[Kendrew in reply to Strelitzia]

All you can do is try your best. Good luck. Xxx

[Knip in reply to Kendrew]

Kendrew, yours is a very encouraging reply and will give hope to many of us! Thank you.

[piglette]

Were you given the results? As we get older our bone density can reduce even without steroids. They reckon 39% of women aged 70-79 years have osteoporosis and 70% of women aged 80 years or greater.

[Strelitzia in reply to piglette]

Thank you. So far I have not been given the results. I will ask for them.

[piglette in reply to Strelitzia]

I just phone the receptionist and she gives them to me. I can go to the surgery and get them printed out too.

[Strelitzia in reply to piglette]

OK Thanks I will try that.

[piglette in reply to Strelitzia]

Good luck.

[AshPen9 in reply to Strelitzia]

If you've got the NHS app you should be able to see them on that, or on Patient Access. I'm going for a Dexa next week with fingers firmly crossed.

[shazstep]

Hi, I am in a simiar situation. In the last 2 weeks I have broken 4 ribs. I had bone density test yesterday. I have been on preds for 6 years now. I have yearly bone density test. My doctor will have the report on Monday and I have to start therapy for osteoperosis. What that entails I am not sure especially while I have broken ribs. Hopefully we can compare notes once the doctor tells me what I have to do.

[Sophiestree in reply to shazstep]

Hi. Just wanted to say, I too have broken ribs, many times, but I have learned what not to do now if that makes sense. Mine was leaning over a sofa to get something from the back or leaning out of a window to clean. Don't do either of those things anymore and never had an issue since. It is a worry, but precaution is also vital with these things. Hence pilates and balance help with potential falls, trips etc. I am fall aware all the time. It becomes second nature after a while. You just have to tell yourself not to reach for these things and to just move the sofa, get a step ladder (with handles) and get a window cleaner!!

[PMRpro Ambassador in reply to shazstep]

The only therapies are oral or injections/infusions of drugs that make the body crete new bone. Nothing too energetic although there are specific forms of exercise that may help.

[Rowergirl]

I got the results of my DEXA scan this week and I have got osteoporosis. I was really shocked as I do a lot of weight bearing exercise and work with weights in the gym. I also thought my diet was good as I eat lots of calcium rich foods. But hey ho, Alendronate it is for me and Ca plus Vit D. I reckon I must have had underlying osteopenia which I wasn’t aware of and maybe the prednisolone has just pushed it over the edge. On a positive note, at least I have found out and can do something about it, some of my friends ( who are shocked that I have been given this diagnosis) are now wondering about their bone health. Now wondering how much extra this is going to cost me on my travel insurance!! 😬

[Graciejack4]

I too have had a recent diagnosis of Pred induced osteoporosis but I can’t tolerate alendronic acid😞and I’m worried about having the infusion due to potential nasty side effects. I take calcium and Vit D tablets but obviously that’s not enough!

[Sophiestree in reply to Graciejack4]

I couldn't tolerate alendronic acid either and have trouble with most drugs as I am a bit of a lightweight with most, but due to having a dvt as a teenager it ruled out a lot of alternatives. On diagnosis of lvv they sent me off for a zalendronic infusion, and like you I was very concerned about any side effects, but other than feeling slightly off the next day, I had none. I have now had two and due for my third and final one in Dec.

[Raewynne]

Yes I believe prednisolone can cause bone density problems on top of everything else that can happen.I have a lot of tendon issues as well.My Dr has been doing regular bone density tests so they must be aware of it.I would hope taking the necessary vitamins and minerals that they would help.Dont give up.

[Bravedave]

I completely understand your shock as I was found to have very low bone density after being on prednisone for 2 years (still on 5mg ) for PMR. Im 64 m, been farming most of my life and healthy until PMR grabbed me. I am now taking fosamax once a week for goodness knows how long which is supposed to slow down 'bone decay' so its fingers crossed. I did get to 3mg pred but started to get aches and pains again so 5mg is the comfy spot. I love this forum it has provided me with so much information...cheers to all

[Strelitzia in reply to Bravedave]

Good to know! Thanks….I agree about the forum

[phebamom]

I recommend perusing this: drlevyhealthinfo.com/osteop...

[Strelitzia in reply to phebamom]

Will do….thank you…

[prairiesong]

The treatments like Prolia and Reclast are really effective, and from the other groups I follow (PMR) the side effects are almost nil. I am starting Prolia next month after 14 months on pred and 10 on methotrexate. My doctor has assured me I will get some density back quickly.

[PMRpro Ambassador in reply to prairiesong]

But watch out when you discontinue it - you either keep taking it indefinitely or must switch to an oral bisphosphonate to avoid rebound loss of the bone density gained if you stop the Prolia which can lead to spinal fractures in the first year or so after stopping.

[Strelitzia in reply to prairiesong]

OK….I’ll write down the names. Thank you!

[Smithie49]

Hello Strelitzia. Like you, I am reeling somewhat as I have just been told I have low bone density following a DEXA scan I had this Tuesday. First ever DEXA and results not good - -1.5 left hip, -2.4 right hip and -3 something for my neck (I think she said). I am 73, very active (tennis, yoga, walking, digging, lugging soil, coal etc) and have a good diet. I've taken prednislone for the past 15 months for PMR and Lansoprazole on and off for the past couple of months. I eat a vast amount of fat free natural yoghurt and I thought that was a beneficial calcium rich food but I read in a link attached on this site somewhere (Dr Levy Health info on osteoporosis) that eating excess dairy oroduct can gave a positive correlation to increased osteoporosis fractures! I really do not fancy alendronic acid as I have silent reflux and find swallowing tablets difficult. I am going to have my get my vit D level checked next week but gave been taking Vit d tablets sporadically. I am stumped, anxious now about falling and am not sure which way to turn. What did you do ? And, many thanks for your post as I found it reassuring to know my situation is not unique x

[PMRpro Ambassador in reply to Smithie49]

"I really do not fancy alendronic acid as I have silent reflux and find swallowing tablets difficult"

Each alone is a contraindication for AA - annual infusions are what you should be offered at the very least.

But really don't panic, your left hip is a normal sort of result and I would be curious to know if the positioning of the scan was right with such different figures. There are many things to do to reduce the risk of falling: good lighting, remove slip rugs and other trip hazards such as trailing cables. Be careful around pets. Make sure your BP is good, too low is NOT good, and keep well hydrated.

[Smithie49 in reply to PMRpro]

Thank you so much. I don't know how you keep giving to us all on this forum. Marvellous and I'm more than grateful x

[PMRpro Ambassador in reply to Smithie49]

Has it been suggested you call the ROS helpline? They are very good about talking your through your options.

theros.org.uk/

[Smithie49 in reply to PMRpro]

I've never heard of it but will have a look. Thanks

[Strelitzia in reply to Smithie49]

After the initial shock, and discussion with my rheumatologist, the only thing I changed was for my daily lunch time fruit I now eat five prunes…due to an article I read about astronauts eating them after losing bone density on space flights. My reasoning being if it’s good enough for them…….I also bought K2 +D3 tablets to start after I have finished the bottle of D3 that I am on now. I have taken solace from the fact that bone density seems to improve after the prednisone treatment. I also with time have just got used to the diagnosis, just another set back in the road to recovery. I am very active, feel great and am careful on the icy surfaces. Life is too short to be paranoid about everything. Good luck. Positive thoughts!

[Smithie49 in reply to Strelitzia]

Many thanks and good luck to you too. I'm off tomorrow to buy prunes!!!😀