Help/ Advice needed on Biphosphonates

[Humphreydonk]

Would welcome some comments/advice from anyone with experience of biphosphonates. I've had my Dexa results - have mixed T score results. Spine is the worst one. T score was -2.2, but Z score was -0.3 . Am on tapering Prednisolone currently 8.5 and am on weekly MTX injections , currently week 8. Also on Hydroxychloroquine. I am not that keen on taking biphosphonates.

[PMRpro Ambassador]

Can you give us the other t-scores too? The z-score isn't that interesting - it is comparing you to others of your own age and comparing rotten apples with rotten apples isn't very illuminationg (excuse the comparison, not meant to be derogatory!). And is this the first dexascan you have had? If so, how have the t-scores changed over time?

[Humphreydonk in reply to PMRpro]

It's my first Dexa scan. Disagree with you somewhat on the Z score. I'm 66 so obviously my bone density post menopause is more likely to be less than a 30 year old which is baseline for T score. Other scores - T score Femoral Neck -1.4, (mild ostopenia ) Z score 0.2 : T score Total Hip -0.7, (Normal) Z score 0.6 I am pretty certain that the T score decline is due to prednisolone and the fact that my health has steeply declined since last year. Lack of my usual activity due to shielding also is factor.

[PMRpro Ambassador in reply to Humphreydonk]

Disagree all you like, that is fine - but the meaningful judgement must be made against the change from the best it could have been for you. Your other t-scores are very little different from normal and better than the cut-off point at which medical intervention is recommended. Good diet, continuing appropriate exercise and review in a couple of years would be most appropiate.

I have similar readings, not quite as good, after 12 years on pred. I have never taken bisphosphonates and the deterioration has been very small. The local osteoporosis guru was amazed at the last meeting and just said to keep on doing what I am doing.

[Mojobumble in reply to PMRpro]

What are you doing may I ask?

[PMRpro Ambassador in reply to Mojobumble]

Eating a decent low carb diet with plenty of dietary calcium (cheese rules ) and taking 4000 IU vit D every day. I don't go mad on exercise - I do walk as much as I can but the last 2 years have cut that badly, not just due to Covid. It seems to have worked so far.

[Mojobumble in reply to PMRpro]

Thats interesting. I dont eat a lot of cheese due to cholesterol levels, although i do love it. On a statin and now under reasonable control. Have a lot of soya/almond milk to substitute. Low carb like you with calcium alternatives; greens. Prunes, bok choi,brocolli.Vit.D, but will now look to change to vit D3/K2.mk7. Thank you and long may it continue for you 😊

[Mojobumble in reply to PMRpro]

I am not wild about AA and would prefer not. My worry is I bump up the calcium intake in diet and tablet form then find i have a deterioration in the spine 12 montgs down tge road at the next scan. How quickly does the bone deteriorate ?

[PMRpro Ambassador in reply to Mojobumble]

How long is a piece of string? No answer I fear. You have to do your best and see what happens. There are alternatives to AA I do eat a lot of cheese - mainly because I don't ascribe to the cholesterol story but that is another question - nor do I take a statin as they make me ill, 10 days at half dose almost had me in a wheelchair, made PMR itself look a dolly!

[Pr0jection in reply to Humphreydonk]

Hi Humphreydonk, I had two scans last year. One in May 2020 before diagnosis and one in March 2021 after being on prednisolone for 8 months. In May I had osteopenia in the L1 vertebrae and in March I had osteoporosis in the same area , -2.5. I can only put this down to four months of inactivity and the effect of the prednisolone. Like you I also questioned the fact that the comparison was made against a 30 year old and as I'm 78 I do expect some change in bone density at my age. However, I was surprised at the change coming so quickly. I refused to take AA having read the potential side effects and the fact that I didn't want to keep on adding more and more medication. Instead I take the appropriate supplements and have a good balanced diet. I also walk, exercise and am generally active. Of course, the prednisolone gives me this additional energy but it also gave me my life back. All the best to you whatever decision you make....

[PMRpro Ambassador in reply to Pr0jection]

What was the t-score for that vertebra in the first scan? Were they done on the same machine and by the same operator?

[Pr0jection in reply to PMRpro]

Hi PMRpro, I was quoting from memory, never a good thing at my age! I now have the t-scores quoted on my reports. May 2020 L1 -2.5, L2 -2.2. March 2021 L1 - 3.0, L2 -2.5 Same clinic, same machine but a different operator who was in a hurry as it was coming up to lunch-time. It may have nothing to do with the results but I remember thinking that he hadn't taken sufficient time to position me correctly.

[PMRpro Ambassador in reply to Pr0jection]

Positioning IS crucial ...

[DorsetLady PMRGCAuk volunteer]

Was there any written advice on the report, which should accompany the scores?..,or it that something else that has gone by the wayside over the last couple of years!

I took AA with no issues for 4 years (not 100% was absolutely necessary in hindsight), but was in the susceptible category so thought it wise…but it’s not required for everyone.

As PMRpro says for many a good diet including any necessary supplements and appropriate exercise is enough, but there is plenty of information on the FAQs -

healthunlocked.com/pmrgcauk...

[Humphreydonk in reply to DorsetLady]

Many thanks- Yes, the letter recommended bisphosphonates. I have another rheumatology appt soon so will discuss pros and cons. I just wanted to gauge the experience of people here on the forum who have taken it to help me come to a decision. It's not easy.

[DorsetLady PMRGCAuk volunteer in reply to Humphreydonk]

No it’s not, and it has to be yours.

There are many that don’t like the idea, and that’s fine, so long as they can keep their bones healthy as described.

But as we always say, one size doesn’t fit all….only you know your family history, especially female members which may have a bearing on your decision.

One lady who had PMR said to me, (I was already on it) “my aunt had osteoporosis very badly, was in daily pain and in a wheelchair, and I was determined I wasn’t going to end up like her, so I took it. “

That may be an extreme case, but it needs to be considered…as does being on another drug that’s not necessary.

Best wishes.

[Pr0jection in reply to DorsetLady]

I understand completely about the lady who had osteoporosis very badly and in a wheelchair. My mother was in a similar position as a result of being on high doses of steroids, yo yo'd up and down and spent her last years bed ridden. As a result I vowed never to take them, but 20 years later when I developed PMR, and after 4 months of almost intolerable pain I succumbed and, for the present, I'm relieved that I did. I hope I don't end up like my Mum so I will keep a close eye on events wrt the possibility of developing osteoporosis.

[DorsetLady PMRGCAuk volunteer in reply to Pr0jection]

Please do..

[PMRpro Ambassador in reply to Pr0jection]

Bear in mind that the immobility induced by PMR is as much a risk factor.

[Kendrew]

Hi Humphreydonk. Some good advice offered already. My own experience of biphosphonates involved a 2nd dexa scan that unfortunately showed deterioration after being on pred for several months. I've now taken it for 2½yrs without any significant problems but had I been osteopoenic rather than osteoporotic, I would not have agreed to take it at all. I personally am not prepared to take any medication without evidence that I actually require it and prefer to try more obvious ways of remediating such problems.....such as through diet, supplements and exercise.

My most recent scan shows a notable improvement in my scores and at my next rheumatologist appointment, I will most definitely be discussing stopping the biphosphonates. As we have to have a break from them after 3 to 5 years anyway, I don't expect this to be a problem.

I hope this helps you make your own decision as to the best way forward for you.

[Humphreydonk in reply to Kendrew]

Many thanks. Like you I've been on pred for several months but as it's my first Dexa scan I don't really know what my bone density was.

I am pretty sure it's the pred that's causing it. It's heartening to see that your scores have improved. I was not aware that the scores would improve. I just thought that the bisphosphonates held things steady so that's encouraging.

Even though the T scores etc point to severe ostopenia this is at one site only, so that makes it harder to decide. I'm like you as regards medicine taking without evidence !

I'm thinking that if I could reduce my pred to 5 mg ( currently on 8.5) in a few months then maybe that would be enough to stem any further steep decline in bone health.

[Kendrew in reply to Humphreydonk]

Along with taking biphosphonates, I've been doing yoga for osteoporosis every afternoon, eating a calcium rich diet and taking high dose of vit.D3 (plus Vit.K2 to ensure calcium is deposited in bones and not blood vessels) Specialist did comment on my significant improvement! He said ...not usually so significant!

[Mojobumble in reply to Kendrew]

Thats interesting. I am currently undecided on the AA due to mixed DeXA score.

Do you think you would have such an imoroved result without the AA even though you say had you known you wouldnt maybe take AA.

[Kendrew in reply to Mojobumble]

I knew initially that my first dexa scan suggested that some action was required to address my poor scores. At the time I had done little research on the matter and felt biphosphonates were my only option. The improvement in my 2nd scan results were described as 'significant' by my rheumatologist and he said the improvement was better than normally seen, so although the biphosphonates clearly contributed to the improvement, I honestly believe that the other factors played a significant role too. This gives me hope that with perseverance and a certain level of commitment, I can probably sustain a more acceptable score and healthier bones without biphosphonates.

[Mojobumble in reply to Kendrew]

Thanks Kendrew. We have some similarities. I feel for the last 9 months i have stumbled along. I still havent seen a rheumy, just a trainee gp in Rheumatogy dept. As my bloods weren't raised it didnt seem to register with anyone. You seem to have a decent Rheumy and able to have a reasonable amount of bloods done. Where I live in the Fylde Coast, its like pulling teeth. Nobody joins up the dots.

[Kendrew in reply to Mojobumble]

I am under a rheumatologist who's a leading authority on the condition. Unfortunately in my case, he doesnt always seem to follow the advice he recommends! Initially I was seeing him privately but my private medical insurance only covers diagnostic rather than monitoring appointments so now I'm one of his NHS patients and see another member of his team..... who has actually proved to be much more willing to listen to me!!To be honest, I am really the one in control of my condition now. I've made it my mission to educate myself as much as possible about both my condition and the medication I'm on and this site has been the main contributor to that.

I inform my GP every 6mths that my rheumatologist has requested the full battery of blood tests again (whether he has or not!) and so far there's been no problem.

I also take control of my pred dose (following PMRPro's slow DSNS tapering plan), and I (to a degree) decide what medication I will or will not take. For instance, I refused to be automatically put on omeprazole at the start of pred, I refused amitriptyline to 'help me sleep' and I refused pregabalin for pain I didn't have!)...... three years down the line I still haven't needed any of them and there was absolutely no evidence to suggest I needed them at the time...they were just being prescribed as 'preventative! I've also recently stopped taking Calcium supplements but do still take Vit.D3 and Vit.K2. (Calcium is not without its problems for some people either)

I would have to emphasise though that I would not recommend that anyone take matters into their own hands without an adequate level of reliable and informed knowledge. I do have a nursing background...all be it from way back.....but I've also made it my business to learn as much as I can from trustworthy sources and I don't do anything without thoroughly 'researching' first.

Any major changes I feel necessary are still usually discussed with my rheumatologist first though or presented as a question on this forum.

[Mojobumble in reply to Kendrew]

Thank you. I am so envious. I havent seen a Rheumy (just a very young gp doing a stint in the Dept. ) My Dexa results have been sitting in the Rheum dept 16 weeks (and are still there). My GPs office acquired a copy of them through a direct route.

The scan was interpreted by the phamacist who informed me i was normal and no action needed, yet clearly I have osteopenia in my spine.

So at the moment I am confused and unable to make a decision on Calcium.

I do have a private nutritionist (one of the few things I have initiated and feel I have control of). She has also arranged a bone resorbtion test for me. I get results next week and also talk to her about the Dexa scan and how this affects my diet and supplements.

I have, since pmr started in Feb this year, followed an alkaline diet (to a degree) as we were unsure it wasnt arthritis backed up with Omega 3 liquid,zinc, vit D, multi vit.

Despite reading up this dexa scan has thrown me and i feel panicked and unable to make a decision.

I have noticed some new doctors appearing on the surgery website but also senior clinical nurses; so i think I will try again for a face to face. Thank you so much.

[Kendrew in reply to Mojobumble]

I have to go out now but if no one else has addressed your last comments I'll respond later if that's ok?

[Mojobumble in reply to Kendrew]

Thank you 🙂

[Kendrew in reply to Mojobumble]

PMRPro has said more or less what I was going to say, though far more eloquently and with a lot more knowledge and information than I would have been able to offer, so hopefully you feel more reassured now. You don't need to be scared as nothing dramatic is going to happen to your bones overnight, so you do have some time to think about what you want to do.

[Mojobumble in reply to Kendrew]

Yes PMRpro (and others) brought me down of the ceiling. My problem is, this forum is the only reassurance i get and i thank you all for it. I have not spoken to a gp since starting Pred and whilst coming down i dont feel great. Symptoms not returning, just the odd tweak in my arm, but the top of my head has a bit of sensitivity (i have always been head sore). I also get the odd sharp short stab in the head. Considering my tension levels i shouldnt be surprised. I will call into my gp surgery on monday morning and ask for a face to face (as i havent had one since this started). My understanding is under normal circumstances PMR/steroids/tapering should be monitored in some way 🙄. In an ideal world.

I had noticed that the surgery, which is big, have updated their website and added some "salaried GPs" and some extra locums. We will see. Thank you 👍

[PMRpro Ambassador in reply to Mojobumble]

Osteopenia is normal at our age - the peak bone density is found at about 30, from then on it usually reduces very slowly so that by 50s/60s pretty much everyone would get a comment of osteopenia. But it is a broad church, it ranges from marginally under "normal" to margnally better than osteopenia. It is the degree that matters. There is also no figure that means this is going to cause trouble - the borderline between osteopenia and osteoporosis is an arbitrary figure they settled on years ago. Make sure your diet has adequate calcium - if it doesn't because you are a non-dairy person for example, then choose a suitable supplement but don't go mad, it is something where taking double is twice as good.

And look here

theros.org.uk/

They also have a very good helpline.

[Mojobumble in reply to PMRpro]

Wow! Thanks PMRpro. What a super website. I knew it was there but had just dipped in to it. I will take time tonight and do my calculations and work out a plan. I feel a bit calmer now with your advice and the advice from the rest of the team. Will look in detail tonight, work oit a plan and run through it with the helpline before i leap into calcium supplements etc.

The sun is shinning here in the north of england so going to take the whippet for a 2 mile wslk. Thanks again.

[Humphreydonk in reply to Kendrew]

Thanks for this help -What dosage of Vit D3 and Vit K2 did you take. ?

[PMRpro Ambassador in reply to Humphreydonk]

You cannot be sure it was the pred - my t-scores were similar after a couple of months of pred, they have barely deteriorated since then, even after 12 years. Almost everyone of our age is slightly osteopeneic - it is the degree that matters.

[Hildalew]

In addition to the helpful replies you receive here, may I recommend you scroll down to 'Bone Health' in the FAQs collection (the link should be top-right in Pinned Posts. I found it very informative and helpful.

[Exflex]

Ive been on steroids for almost 2 years and was put on AA one month after starting at 15mg. (I had hand issues with AA so my GP Dr switched me to Risedronate). I’m currently on 6mg and still taking Risedronate weekly. Since 5mg is considered a ‘safe’ dose, I will discuss with my GP whether I should discontinue at that point. In a way I’m sort of glad I’m on medication to alleviate the effect on my bone health as I’ve had two accidental falls during the past two years and no breaks or fractures.