I’ve been taking Pred since first diagnosed with PMR in 2018 I’m now on 2.5 mg a day .I have just seen a Rheumatologist for the first time ( I know right?) and also have just got my results back from my second DEXA scan which shows I have osteopenia . Rheumy has suggested taking Alendronic Acid .. I don’t really want to ..My results are above ..Any advice would be greatly appreciated .
Do I need to take this ?: I’ve been taking Pred... - PMRGCAuk
Do I need to take this ?
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chillipeppergirl32
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Personally I would not take AA until I was diagnosed with osteoporosis but don’t listen to me. You could contact the Osteoporosis Society theros.org.uk
Thank you for your reply , I will give your link a read ..
Good luck.
It'd be too late by then. But I conclude, after my research after my fractures, that came totally out of the blue when my DEXA said I had nothing to worry about, that the risk of not taking bone protection/builder is just not worth the risk. It's personal choice. It'd be interesting to see if the ROS nurses agree, I suspect they do
Thank you for this , I will see if I can chat with a ROS nurse then ..
They're amazing and so helpful
I don't know how old you are, but I'm not sure i would take them with those scores. Do you take Vit D and K2?
My scores are way higher at -3.9 and it only since being diagnosed with LVV and taking pred that I agreed to Zolendronic infusions.
If you do decide get any dental work done you need first as dentists can be very wary of treating people on AA
I also didn't get on with AA at all and had to stop after 3 doses I felt so awful., but I am very sensitive to medication.
I’m 60 in April . Yes I take Vit D and have been for a few years now . I have just started to take marine collagen which has been suggested to me to take if I choose not to take Alendronic Acid . And I’m using light weights to hopefully get some muscle strength back 🥺
Look up Margaret Martin on YouTube she has specific exercises for osteoporosis. Light weights are good, heel drops etc.
thank you 🙂
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Since you are now at such a low dose and those results are near enough normal - the osteopenia comes from the slightly lower result for the spine - I would say that AA was really trying to push a door shut long after locking up time. If you have got to this low a dose without any significant loss of bone density, it seems a bit pointless to add it now and I would be more interested in what a REAL osteoporosis expert would say.
My only caveat is whether those density readings really are true - high BMD levels may be seen in there is any osteoarthritis around the pathway of the beam and it makes bone appear denser - but it isn't healthy denser. However - that is usually mentioned in the longer-winded report by the radiologist.
Pred also affects the trabecular structure of bone and that isn't yet routinely looked at. It can be damaged without any change in bone density as tangocharlie found to her cost when she developed several spinal fractures despite OK dexascan results. I also had a good dexascan result - but a spinal compression fracture was found too. However - the osteoporosis expert from Leeds who gave a talk to the Yorkshire group a month or two ago gave the impression that even she wouldn't insist on AA with a dexascan result like that. But she would like to see bisphosphonates used a lot more preventatively.
Thank you That’s interesting , The Rheumatologist I saw recently was not happy at all with how my GP surgery have dealt with my PMR path ( he was diplomatic but It was not hard to see his irritation ) I have taken Pred since 2018 without taking AA or Omeprazole . I really don’t want to start now I’m on such a small dose . As you say it’s a bit back to front 🥺
I never took omeprazole either - not considered essential here. Nor AA - because my results back in those days in the UK were considered as good enough for just monitoring. Which I did as I live in Italy and could have a dexascan on demand for under 40 euros, now I can have them free!!
Why have you finally been sent to see a rheumy?
Because my GP has changed and he didn’t like that I was still taking Pred after all this time so wanted a second more specialist opinion .
Ah - a believer in the "PMR lasts 2 years" myth. And the rheumy said - apart from the addition of medication you probably don't need?
He was concerned that I didn’t get tested for other conditions at the time of my PMR diagnosis , implying that I might have been miss diagnosed
So is he checking now? I wasn't really tested - the rheumy I eventually saw got it wrong DESPITE testing. He decided it was PsA and wanted to start me on sulphasalazine - which I couldn't as I was about to move here and needed a rheumy for that. I have seen 3 or 4 specialists here who weren't concerned it was anything else, including the current one who is a world name in the field and I think might recognise something else. As it is - I am one of a small but growing cohort of Long PMRers and very involved in research for PMR
This new Rheumy would ideally like me to be off the Pred ( if I can 🥺) completely and then see what presents and test then , I’m seeing him in 4-5months again . I won’t be off Pred by then . I’m enthusiastic about the concept of getting off it altogether but haven’t been able to (yet) due to flare ups and withdrawal symptoms .
Hi chilli, that happened to me. I reported pmr type pains and they went away with a trial of Pred so pmr was diagnosed, just like that. Then the pains came back and the diagnosis was in doubt and I was told I had to come off Pred PDQ! After struggling with the taper and going up and down with my dose my GP now concurs that the rheumatologist is 'probably' right and there is a 'degree of PMR involvement'. Since joining this wonderful form I recognise that I do probably have pmr (family history of it and other autoimmune conditions) and my endocrinologist is now on side. I do hope you can get the help you need to find the way forward. I have found the information here is trustworthy
Yes , I wouldn’t have managed without the wonderful info on here 🙂
I was diagnosed in 2018 too. All the medics have wanted me off Pred. Now they just accept or have read more about PMR😊
I think the GP I saw ( in his defence) thought another opinion would be beneficial … he doesn’t know me , it’s the first time I’ve ever seen him … My GP ( the one that originally diagnosed PMR ) has retired . I now have no continuity 😬
When I was finally diagnosed, persisted firstly with tendonitis, my GP said very important to take a stomach protector. As I'd previously, but rarely, taken Naproxen for my Osteoarthritis he re-prescribed Omeprazole. Doesn't seem to be a consistent approach but wondering if at next review should query if necessary? Actually Naproxen, even after a couple of days or so, upset my stomach even with the PPI. The 'possible' effect on my stomach yet another reason deliberating about going on Alendronic Acid. I dare say there's 'possibles' with most medication, not least Pred but to me more clear cut good QOL or not.
On the issue of DEXA scanning , this is all we are offered .. How can you get better scanning through your GP referral ?
As I explained - I don't live in the UK now!! But then I did have a baseline done as soon as I was started on pred - that was 16 years ago, weren't the long waiting lists back then and it so happened the machine was in my husband's diagnostic department so it was done when the technician had a spare 10 mins. Many people are denied a dexa - so much easier to say "take this anyway", saves the need for a dexa. But that means if you DO develop osteoporosis, it is blamed on pred rather than the distinct possibility it was already present.
Sounds like you were very lucky to have access to scanning so often
Just because I now live where I do I suppose, Though it didn't predict my spinal compression fracture. They don't work perfectly, don't tell the whole story.
No but better than nothing at all
Not entirely - because you get lulled into a false sense of security - ask tangocharlie
And yes , The lower bone density could be due to menopause rather than the Pred
It desn't matter what the cause of osteopenia is, the result is the same. The odds are not good even if you're not on steroids, 50% of post menopausal women will get osteoporosis
Good point
Just to add - in the case of osteoporosis due to menopause, it is just bone density but the bisphosphonate stabilises the bone by adding calcium. In osteoporosis due to pred, there is a double whammy - the trabecular bone structure is als affected and then the bisphosphonate does 2 things.
OK
Maybe look at ROS site or speak to one of their nurses -they are excellent -
theros.org.uk/information-a...
Thank you have taken a look and will do that
My rheumatologist ordered a dexa scan and decided I didn’t need to go on AA. Also ordered a PET-CT to look for signs of inflammation as my blood markers remain stubbornly elevated above the top of the normal range. None found apart from some enthesis of my Achilles tendons which we already knew about.
Does that not make him wonder whether this isn't "just" PMR but a polymyalgic presentation of a spondyloarthropathy? There have been several on the forums ver the years where it turned out not to be PMR plain and simple after all.
I was being treated for GCA not pmr due to symptoms - tests too late and inconclusive. Responded immediately to high doses of Pred. Achilles problems have only shown up recently - didn't have them pre Pred.- and inflammation markers, having normalised for a month or two on megadoses back in 2023 , came back up again and have stayed stubbornly more or lesz the same regardless of dose or illness for best part of 18 months with no pain or symptoms until the last couple of months. Rheumy calls me a mystery and wants me to come off steroids and let whatever is going on "declare itself" .Which is of course what may now be happening as I am on 3mg.
I started getting bone pain in my lower arms after a few months on the Alenondrate(sp?) Have stopped it and am taking calcium supplements. Didn’t like the fact you have to stand for 30 mins. But it may work for you without side effects. Good luck!
I’m increasingly on the side of not taking it at all ! Really don’t like the sound of the side effects . Think I’m better off exercising more and doing light weights and carrying on with taking the calcium and Vit D . Will see how the collagen helps over time too .
I have found Dr. Lisa Moore of "Brick House Bones" to be very knowledgeable. She provides appropriate exercises for persons with osteopenia and osteoporosis that you can access on You Tube or on her Facebook page. She is very knowledgeable and easy to follow.
Will check her out, many thanks
You don’t have to stand -you just have to not lie down. I either had a shower or sat and read emails.. some stand and do a bit of ironing -not my choice 😊..
but it is only once a week and 30 mins.. 🤣😂
You have taken it without any negative side effects ?
Took it for 4 years with no issues whatsoever...
That’s good to know
You do NOT have to stand for 30 mins -- you have to remain upright, not bend or lie down, that isn't the same.
I wouldn't take it at all. Dietary calcium, Vit K2 and resistance exercise only for me.
Yes , I’m feeling more confident in my decision to not take it the more I hear this 🤗
Vitamin K2 is very important.
I didn't take AA in my first year on pred - wasn't offered it - but I did my second after a DEXA scan. To be honest I wish now I'd taken it from the start but I most likely would have refused it - going on pred was scary enough. The notes with my results said to take it until I was below 5mg as a preventative measure. I'm guessing that consultant thinks below 5mg is a lot less risk to bones - sounds good to me.
I think he wants me on Alendronic Acid eventhough I’m on a low dose of Pred but it was all dependant on the Dexa scan results which we didn’t have when I saw him … I have been advised to take AA by my GP . Will see the consultant in about 4 months , not sure how he will react until I see him again .
Do you now have low bone density ?
I’ve not had a recent scan. I’m hoping that what I have taken has stopped me slipping into the osteoporosis range. We shall see. However what has often been mentioned on this forum is it’s the quality of the bones that counts and that’s complicated to measure. Can only hope.
I have been on Prolia for the past 2 years with no problems at all, It's a relief to know my bones are protected, My doctor said she sees far too many avoidable fractures. I have had PMR for nearly 8 years. I'm currently on 2 mgs pred and diagnosed with osteoporosis. Good luck!
Thank you , that’s reassuring ..
ref PMRpro’s recent response I had a Zoledronic acid infusion instead as I wasn’t prepared to take AA. The infusion is simple and given annually for 3 years. When a Rheumatology Clinician rang to say my PET scan showed I had a vasculitis disease she stressed the importance of protecting my bones from the outset and said she was sending a prescription for AA and Adcal-D3 (as well as Pred) which I needed to start immediately. I took this urgency at face value and even chased my consultant when he later omitted to arrange the alternative for AA. I’ve since realised that I probably may not of needed it at this stage but take the view that it’s probably better to strengthen my bones before they start to deteriorate and cause me problems that I might otherwise have avoided. Always difficult to know what to do for the best especially if, like me, in the past you’ve steered away from taking medication unless it’s absolutely necessary.
Thank you for that @Obscureclouds the Infusion sounds much easier to tolerate
Just a note - if you want to tag someone using @, as you type their name a list of names will appear in a drop-down list. You must click on the name in the list to make the tag and the name will turn blue when you post it.
As it happens you did reply to Obscureclouds and they will be notified but on other occasions wouldn't be.
Thank you PMRpro 🙂
I was told I had osteopenia (where I live it's called low bone mass in the scan reports), numbers worse than yours, and AA was recommended. I didn't take any medications but have since been doing other things to protect my bones. The following year I had a followup DXA scan and results were improved enough that they dropped the recommendation for medication. I haven't been able to get another scan since then (second one was in 2016, am waiting these days.... months.... years.... to be given a new one.) I took pred for PMR for 8.5 years, ending just over a year ago. You can read my story here:
healthunlocked.com/pmrgcauk...
So much good information HeronNS . I have saved your post with all the links for me to refer too , Thank you 🙂🤗
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