Between a rock and a hard place :-(

[Pangolin43]

Hello. I’m looking for advice from the experts on here and others who may have been in a similar quandary.

In December 2020 I paid privately for a Rheumatologist who suggested a DEXA Scan. I did this because of various aches and pains particularly in my legs and hands which I couldn’t fathom. The rheumatologist couldn’t either. As non of my symptoms seemed particularly’one thing or another’.

The DEXA results were as follows........(T scores = total spine -2.4, hip score -1.2, femoral neck-1.3) I was told I was within the osteopenia range and given D3 for ongoing bone protection.

I was diagnosed in April 2021 with ‘post COVID PMR’ and put on 15mg Prednisolone. My tapering has been a bit hit and miss at times with a couple of flares. I am currently reducing to 5.5mg using DSNS taper. I am just about to be transferred to NHS Rheumatology and have an appointment on 30th January and requested another DEXA scan.

The results are as follows (T scores = total spine -3.1, hip score -1.7, femoral neck -1.6) (Z scores = total spine 1.7, femoral neck -0.4, hip score -0.6). The BMD describes me as ‘severely osteoporotic’.

I felt very upset and devastated when I read these results... my GP wants to discuss Alendronic Acid. I said I wanted to know more and would make an appointment to discuss in January (which is now here!). I have read a lot of others thoughts on this forum regarding this treatment and the side effects. I’m scared of what I need to do next. I feel I have no choice but to take the treatment and prevent further bone loss. I am 61 years old. What to do?

[PMRpro Ambassador]

Call the ROS helpline and talk it through with experts. The only severely osteoporitic reading there is the spinal one and I think there are particular options which are better for spine.

theros.org.uk/

Mind you - not sure what aches and pains had to do with needing a dexascan! But rest assured your hip results are still fairly good. However - spinal fractures can be very painful.

[Pangolin43 in reply to PMRpro]

Thank you for your speedy response. I feel a bit more reassured. I don’t get why my spinal one is so bad compared to the others. I did call the ROS and the nurse I spoke to was very knowledgeable. She advised taking ‘something’ as I was now in the know and lucky compared to others who find out they have osteoporosis after a fall. Although I felt ‘all over the place’ I did make a few notes. She talked about other options, one of them being HRT!! Has anyone else taken it for osteoporosis? I still value hearing others’ experiences on this site as they are living with these things daily. PMRpro do you know what is a better option than AA for the spine? Thank you in advance.

[PMRpro Ambassador in reply to Pangolin43]

No, afraid not, that's why I suggested ROS. Spinal values are often worse than the others - and they aren't absolute nor can two results from different devices be compared. And technically - since the angle of the beam is crucial, really you can't compare results directly even from the same device.

Maybe this may help your cogitations:

huffmanclinic.com/treatment...

[Pangolin43 in reply to PMRpro]

Brilliant. Thanx

[piglette]

Steroids can cause deterioration of bone density, but as we get older a lot of us will find our bone density will detiorate anyway. As you are worried about your Dexascan readings and Osteoporosis, as PMRPro suggests you should really ask on an Osteoporosis forum, as not everyone on this forum has osteoporosis or even osteopenia. In fact a lot of people cannot even get a Dexascan!!

[Pangolin43 in reply to piglette]

Thank you for your helpful response Piglette. I’ve already been in contact with the Royal Osteoporosis Society. They were very helpful. I’m just trying to find if others have had similar experiences. 😀

[piglette in reply to Pangolin43]

There is an Osteoporosis and Osteopenia forum on

patient.info/forums/discuss...

[MiloCollie]

good luck with going forward. I would think a tablet would be easier than fractures but talk it out xx

[HeronNS]

I'd like you to have a look at my story. It is interesting that your t-score seems to have worsened rather quickly, but please be aware that the DXA scan is not really useful for anything more than a guide. People can have a poor t-score and yet have strong bones. We are not all healthy 30-year-old soldiers! But there ARE things you can do to improve your bones naturally. The biggest risk is - wait for it - having already had a fracture! If you have not had a fracture, then consider options other than medication. You can always change your mind later and start medication if you feel you should, but wait for a bit to make sure you really know what is best for you.

Also, apart from prednisone, there are other possible causes for osteoporosis and if not done yet your doctor should check you for those as well. The mere fact that covid led you to develop PMR may mean that other things in your body were disturbed. A non-so-rare cause of bone thinning appears to be a problem with the parathyroid glands. Completely separately the thyroid itself can be implicated, and there are a few others. Links:

healthunlocked.com/pmrgcauk...

osteoporosis.ca/medical-con...

Best wishes, whatever you decide. 🍀

[Pangolin43 in reply to HeronNS]

Thank you very much HeronNS. You have really given me a different view to explore. I’m going to take a look at your story 😀

[Sophiestree]

My first question would be, did you have the second scan in the same place as the first as they can differ quite a bit and it is always advised to have comparisons on the same machine. What was the time difference between the two as that seems a big drop and I would question whether that is accurate. I know how all consuming these numbers are, but the pains you are having wouldn't really be connnected with that so I'm confused as to why he thought a DEXA would help.

My numbers are way worse than yours, I was in the osteoporosis range in my early 50s. But I couldn't tolerate AA at all, managed 3 and then stopped.

I recently paid for a REMS scan which was revealing to say the least. He was questioning the last massive drop and I explained it was a different hospital and machine as the wait time (during covid) was so long. It turned out my bones were nowhere near as bad as I thought. The person doing the REMS was a Spinal Surgeon who has a huge interest in the new way of scanning bones. He is a big advocate of HRT, which I was not allowed as I had a history of DVT and so no doctor would ever subscribe it, even though I was prepared to try it. He also went through diet, which I already do, and walking, light weights, along with a vibration plate (gentle setting). Made me wonder if I needed the Zalondronic infusions I had after all, as now I am stuck not being able to get my teeth sorted as no dentist will touch me.

I have taken 4,000 iU of Vit D for years and thanks to HeronNS now take K2 and Zinc. Might be a good idea to look into those. If you do decide to take any medication, do look into it properly and make an informed choice. Read Heron's story. It is really interesting.

I know how you are feeling right now, but take your time in deciding what you want to do next, it won't make a huge difference whether you start now or in a few weeks time.

Good luck

[PMRpro Ambassador in reply to Sophiestree]

Which reminds me - ALWAYS get a dental survey BEFORE starting any bisphosphonate!

Mind you - I think your dentist is being a tad nimby! Come and see mine - though I haven't discussed it with him since it isn't a factor for me.

[Sophiestree in reply to PMRpro]

Ha, so true. I need several implants. So yes, need to find a brave one, but thought I might wait until I am on a lower pred dose. Having said that, I have cancelled the third one after my REMS so that's something..... Where are you again? Maybe I can have a few trips to Como with my sister and then up your way!

[PMRpro Ambassador in reply to Sophiestree]

Bruneck/Brunico

[Sophiestree in reply to PMRpro]

OK, maybe not, it's a 5 hr drive, doing that a few times wouldn't be too practical.

I just had a look on the map though and recognise so many of these places from working on Italian Football for Channel 4 for 10 years!!!

[PMRpro Ambassador in reply to Sophiestree]

Very exciting now - FC Suedtirol are now in Serie B!

[Sophiestree in reply to PMRpro]

Giddy heights.... Loved those days...

[Pangolin43 in reply to Sophiestree]

Hi Sophiestree. Thank you for your measured response. I had my DEXA scan in two different hospitals. One private and the second NHS. There is a two year gap between the scans. I had the first one at my own request, partly due to the pain I was experiencing and partLy due to the thought that if I needed any medication it would be good to know the condition of my bones. Not sure why I had that thought but I guess forewarned is forearmed. I had private medical cover at the time (I don’t now). I’ve never heard of a REMS scan! Re your comment about HRT - As I am a carrier Factor V Leiden (increases the chances of developing abnormal blood clots) I probably wouldn’t be allowed it either! After reading your response I definitely need to have my teeth looked at too. 🤔

[Sophiestree in reply to Pangolin43]

Haha, re teeth. Yes, do get them checked. I truly think my teeth are bad due to stress as once I was referred to Guys Dental Training Hospital and they remarked on how good my dental hygiene was and I had very little plaque, but still needed extractions. And so that sorry saga goes on.

REMS stands for radiofrequency echographic multispectrometry, it is a deep dive and will show 3D bone. Annoying re the HRT, as I think it would have helped me and you.

I don't have private health either, but think a private DEXA varies depending on where you are in the country. I am London based and it's about £125 my way. If you could afford that it might be worth getting another done in the same private hospital (checking of course it is the same machine otherwise there is no point).

Either way, you have time to decide. Look up some of the drugs they offer, they have some pretty scary side effects, and decide which you think might be the best for you if you want to go that route. Nothing is going to change that quickly, so you are not in a hurry. Look at diet and exercise too and the very least VitD but a decent dose, not a low one.

I got obsessed when all this first happened way back when, but I am sick of my health now and so don't think about it too much, but do try and help myself with diet, vitamins and walking, never underestimate walking.

Take care

[Pangolin43 in reply to Sophiestree]

Thank you for your explanations Sophiestree, I’m in London too so may go back for another private DEXA scan. It’s clear that I have a lot of thinking to do. 🤔

[HeronNS in reply to Sophiestree]

If you take a zinc supplement make sure you have a source of copper also. I don't take separate zinc supplements, although your comment here made me double check the bones supplement I take and it contains zinc, copper, boron, and a number of other bone-friendly micronutrients.

[Sophiestree in reply to HeronNS]

Thanks for that. I didn't think you should take copper at the same time as Zinc. I am hoping I get copper from the small bit of dark chocolate I have most days! I don't take boron either, should I? Feel my little daily pots I made up and overflowing as it is!

Your story definitely got me motivated and I am grateful for that, thank you

[HeronNS in reply to Sophiestree]

What follows is simply my opinion, formed from reading and learning from others. I don't have any training in nutrition so am always open to learning more, and to being corrected.

There are several considerations when deciding whether or not to take supplements. I didn't know about zinc supplementation causing a possible copper deficiency until someone pointed it out to me on the forum. Can't say I've ever investigated what my diet actually includes, and it just so happens that the calcium supplement I settled on does also include a lot of the micronutrients. I also learned that taking calcium can inadvertently lead to a magnesiun deficiency as the body prefers calcium and if you are taking the larger amount of calcium in a supplement it doesn't adequately absorb magnesium if taken at the same time. And then there's the idea one can get magnesium from an Epsom salts soak, directly through the skin. Some people get their Vitamin K2 from an oral spray, although I've actually never seen this on the shelf anywhere. Calcium supplements do tend to interfere with absorption of a number of nutrients and medication (like pred, like elements like iron and magnesium) so it's a good idea to make sure one isn't overdoing the calcium.

So the best thing really is to get your nutrition from food; after all, that's what animals have been doing on this planet for bilions of years so presumably that's the best way. Only we have tinkered with the environment, and if an element isn't in the soil then it doesn't end up in the plant and therefore not in what we eat. Or maybe something we don't want is in the environment and we get too much of something unwanted, like arsenic in rice. I don't know what they feed plants grown hydroponically. Do leafy greens grown that way provide us with any calcium?

At this point it seems sensible, although usually not essential, to back up our healthy diet with a supplement, not least because both aging and pred can diminish our ability to absorb all the nutrients we need properly. But apart from being aware that some supplements in excess might cause an imbalance I don't think we need to stress too much.

[Sophiestree in reply to HeronNS]

It is a minefield isn't it. Sometimes I find I read too much and then just get confused so I think we all just need to do what we feel is right for us.

I believe Better You do a K2 only spray and an K2 and VitD combined spray.

My problem with the sprays is I forget to use them. I take thyroid medication every morning and so take everything else at the same time , at least that way I remember some of it.

[HeronNS in reply to Sophiestree]

I'm quite happy with the capsule I take. One thing I noted after I'd taken Vitamin K2 for a few months was my previously (for quite a few years) very sensitive teeth became much less so, and that improvement appears to be permanent. 😁