osteoporosis following pmr

[Moness]

my pmr diagnosis coincided with the start of lockdown so I never saw a doctor. I was eventually prescribed pred and omeprazol over the phone in May 2020 and thankfully managed to taper down to zero by early 2023 after major abdominal surgery. All seems fine for now but my new Gp was shocked that I never had meds to prevent osteoporosis so I had a Dexa scan the other week which showed that I have osteoporosis in my spine. That is quite upsetting and I will be starting on vitamin C & D plus androlic acid. I just want to warn people new to pmr to make sure they are aware of this as there is just so little information about the condition other than through this forum. Good luck to you all with your pmr journey.

[DorsetLady PMRGCAuk volunteer]

Think you mean vitaminD and calcium supplement.

If anyone reads the PMR guidelines, then drugs to avoid osteoporosis are strongly recommended.

Not sure you can say there isn’t any information out there just Google PMR and you’ll get plenty of links including the charity webpage.

[SheffieldJane]

Thank you! I felt quite afraid of this drug’s side effects - more than other drugs- I may live to be sorry.

[PMRpro Ambassador]

It depends on the person - and that is why we say a dexascan is required. I was on pred for 15 years with just calcium and vit D before needing to consider a bisphosphonate - there is a lot of variation.

What are your t-scores? The spinal ones are often worse than the others and it very much depends on how bad they are as to whether you need to worry.

[Dinahmite in reply to PMRpro]

My doc refused me a Dexa scan so I paid for one and was surprised to find I have osteoporosis already in lumber spine and femoral neck. T SCORE - 2.7 Also 1.0 and 1.1 SD below mean for age. When I asked about the scores my GP didn't know how to intrpret the SD and I don't either. Now on Alendronic Acid, calcium, vit D ++ others. Prunes said to be great for bones.

[PMRpro Ambassador in reply to Dinahmite]

The SD is the standard deviation and in this context it is from the mean for readings taken in healthy 30 year olds - your bone density is about at its maximum then. After that, your bone density tends to very slowly reduce until menopause in women when the rate often speeds up. Osteopenia is the term used for bone density that is lower than the average 30 year old, the SD ranges from -1.0 to -2,5. After that it is defined as osteoporosis. No reason for the actual figures - just chosen out of thin air for the definitions. Most people who get a broken bone have normal bone density and many who have osteoporosis never break a bone.

The reading relating to age-matched subjects isn't really very meaningful - it is like comparing my rubbish with next door's rubbish, It is still rubbish! If everyone else has osteoporosis - it is still osteoporosis.

niams.nih.gov/health-topics....

mayoclinic.org/diseases-con...

Not impressed by a GP who can't even explain the basics ...

If you want more info, the Royal Osteoporosis Society is excellent and has a brilliant helpline.

theros.org.uk

[Dinahmite in reply to PMRpro]

Thank you. I wondered if I really needed the Alendronic Acid. My mum who was super fit did have 2 breaks. Once her arm and once her femur. It finished her off sadly.

[PMRpro Ambassador in reply to Dinahmite]

A femoral fracture in the elderly is often a death sentence which is why doctors are extremely sensitive about us taking a bisphosphonate. Trouble is - they don't sell it well and difficulty getting dental treatment is a far more immediate problem.

[Rugger in reply to Dinahmite]

I have 5 prunes every day (365!) with my breakfast. I do have osteoporosis. I have plenty of calcium and vitamin D and have had 5 years of a bisphosphonate.

[Dinahmite in reply to Rugger]

Good old prunes!

[Pr0jection in reply to Dinahmite]

Yes indeed, I have six small Lidl prunes every day, three with breakfast and 3 more with lunch. Have done ever since I was diagnosed - along with Calcium + Vit D, plus extra Vit D supplement.

[powerwalk]

Usually the other way around!! Automatically give prescription for AA!! I didnt take it and eight years on have recently been diagnosed also with osteoporosis! I've dreaded the day i might need these bone meds (i am very bad with med side effects) and am finding it very difficult to accept. But its there so i may get used to it!! Good luck with it. The joys of all this!!

[Moness]

hard luck, you can’t win with these things can you!

[Orange_2022]

I think that Omeprazole can also impact bone health. I stopped taking that as I realised I had no need for it once I read the leaflet! However as my Dexa scan showed the top end of osteopenia, I am now taking Alendronic Acid but also calcium (supplement and diet) and vitamins D and K. There's lots of helpful information on the Royal Osteoporosis Society website - reassuring and practical (diet, exercise, medication) as PMRPro says. Wishing you well.

[PMRpro Ambassador in reply to Orange_2022]

By top end of osteopenia do you mean nearly normal or nearly osteoporosis?

[Orange_2022 in reply to PMRpro]

Nearly Osteoporosis...

[PMRpro Ambassador in reply to Orange_2022]

Fair 'nuff ...

[Oh-my]

When I was diagnosed autumn 22, l was given very little information. Nothing on vit D, only a diet sheet on calcium. A year later a different GP at the practice randomly sent me a text message to inform me I now had a prescription for Alendronic acid and calcium/vit D. I got myself a private DEXA scan which showed borderline osteoporosis so I’m going with the AA, but I queried the supplements as by then I was making sure my diet covered it. A text message gives no opportunity for discussion with the GP on AA side effects, alternatives, do I really need it or overdosing on supplements. They are so short staffed at the moment it is easy to get forgotten.

[PMRpro Ambassador in reply to Oh-my]

Yes - you need the calcium/vit D when on a bisphosphonate to ensure you don't develop low blood calcium levels which can be dangerous. The bisphophonate makes the calcium go to the bones and can leave a low blood level. One cause of osteoporosis is low blood calcium due to poor diet and calcium is leached from the bones to keep the blood level in the narrow range required to keep the body working properly. Low calcium can have muscle implications and cause spasms and twitches but also have an adverse effect on the heart.

[Oh-my in reply to PMRpro]

Agreed.

And too much is also a problem. It took a further 6 weeks to talk to my GP but we agreed that I was getting enough calcium in my diet.

I was put on iron supplements during the first 6 months of steroids. Iron and calcium compete. I do wonder if that may partially explain my initial big drop in bone density. Who knows. Can only do your best.

[PMRpro Ambassador in reply to Oh-my]

Enough calcium for normal situations maybe but pred also makes you lose more calcium through the kidneys and the primary reason for calcium and vit D supplementation is to make sure there is more calcium available for capture and vit D to transport it into the system. It is true that too much calcium causes problems too and several on the forum including me have had to discontinue calcium supplementation because of grit in urine, joints and gall bladders. It often contributes to the cystitis many of us suffer. However, that seems to be mainly with the cheap calcium carbonate used in the UK and os less the case with other forms. Or using 1 dose a day instead of 2 solves it. Some more, but not too much.

[Oh-my in reply to PMRpro]

Understood. My minimum intake for calcium is 1500mg per day from plant based milk and dairy milk and yoghurts & kefir. Tofu is good too. It’s spread out over the day as anything over 500mg per 4 hours is excreted. I’m not sure I could fit in a supplement if I had too.

[Missus835 in reply to Oh-my]

Yes. You need the supplements. I now have 9 vertebral fractures. Not fun. I take K2, D3 (3000), Calcium in my Tums, C and had a Zolendronic Infusion last October. Hopefully it's kicking in. All the best to you.

[Oh-my in reply to Missus835]

Yes if your diet doesn’t cover it. My GP was happy I was meeting the required amounts in my diet. I do take some vit D (although it’s added to plant based milk)and K2, which can also be found in kefir.

Hope the infusions do the job for you.

[Numptybrain]

I too have osteoporosis and take alendronic acid with a whole of other meds including steroids. I was 59 when diagnosed and already had spinal surgery TLIF for bilateral fractures S1/L5 also I’ve had rib fractures which I was unaware of, actually thought it was muscle pain, in fact GP, was treating me for muscle pain. I was stuck using a wheelchair for outside use. Unfortunately my spine is giving me huge issues again so rheumi took X-rays, just incase. I take probiotics, loads of vitamins, issued by GP , folic acid , I use a rollator for walking for balance ( to prevent falls) daily, through the pain . I’m waiting to see about access to a hydro pool but with my low blood pressure and pleural/pericardial effusion’s I’m crossing fingers.

Good luck

Wendy xx

[Moness in reply to Numptybrain]

I’m so sorry you have those problems, it must make life very difficult. Best of luck with it all

[Missus835]

I have developed severe osteoporosis and have 9 compression fractures. This is from the Pred. I have to be very careful of my back. I can still walk mostly with my walker (rollator), for balance. Exercise mildly. If you are unable to tolerate AA, ask about a Zolendronic Acid infusion. Everything has side effects but so far so good. Keep moving as best you can. Watch any lifting, even from oven or heavy pots. Watch twisting and get a grabber to reach stuff on the floor or up high. One day at a time.

[Moness in reply to Missus835]

Thanks for the practical advice and best of luck with your own condition

[WhatNoCarbs]

So sorry to hear about the problems that everyone’s been having with the Osteoporosis. I’m 57 and have been on pred for PMR for 1yr 7mths and AA, Ca& D2 tablets for 1yr for Osteoporosis (in mid-red zone). I’ve just found out I’ve got a severe iron deficiency now! Everything else seems OK. I’m probably low on K2 due to other meds too. Doctor worried due to iron, so about to go on iron tablets and Omeprazole. Hubbie warning me off Omeprazole so unsure of that. Have temporarily stopped AA.

One thing (mentioned by an above blog) be careful with iron and calcium. I was taking a multivitamin at the same time in the morning with my Ca tablet and the Ca tablet reduces the absorption of any iron consumed. With my new iron tablets Doctor is warning me take the iron tablets 6 hrs after the Ca ones. I’m not taking a K2 supplement yet. Open to any suggestions!

[PMRpro Ambassador in reply to WhatNoCarbs]

And the calcium tablet must be taken at least 2 hours after your pred!!!

[WhatNoCarbs]

Aah… which I was also not doing! And pred with breakfast?

[DorsetLady PMRGCAuk volunteer in reply to WhatNoCarbs]

Info from the FAQs-

healthunlocked.com/pmrgcauk...

[WhatNoCarbs in reply to DorsetLady]

Thanks. Did today for 1st time.