Alendronic Acid

[Stellazero]

It has been recommended that I take Alendronic Acid to protect my bones whilst taking Prednisone as I now have Osteoporosis. To be honest given the potential horrendous side effects of Alendronic Acid which on top of those of taking Prednisone and of course the impact of having GCA I am reluctant to take another drug. My preference being to continue to take the Calcium/Vit D I am taking, doing weight exercises, walking, good diet, no smoking or alcohol. Has anyone had to make this decision, what did you decide, and do you have any advice? Thank you in advance for any responses. Julian

[PMRpro Ambassador]

What are your t-scores? How severe is the loss of bone density?

Whilst the potential adverse effects are scary - believe me, the potential adverse effects of severe osteoporosis and a hip fracture are also pretty scary. If you are already in the osteoporitic range, the likelihood that calcium and vit D and what exercise you can do with PMR will reverse that loss of bone density is pretty low. AA is not the only option, there are other bone protection medications, I suggest that you call the ROS helpline where a trained specialist nurse will discuss all the options and risks.

theros.org.uk/

[Stellazero in reply to PMRpro]

Thanks that is very helpful my T score varies from -1.9 to - 3. I will talk to my Rheumatologist about alternatives. Thanks again

[PMRpro Ambassador in reply to Stellazero]

I assume the -3 is the spine? It is common for the spine to be lower but you wouldn't want it to get much lower than that, My husband tripped and fell and developed a spinal fracture with a similar score - it was horrendously painful and it, together with his general frailty anyway, set him on a downward path, And if the spine gets worse, you could develop fractures even without a fall,

I am against all unnecessary drugs and I have never taken it - but my dexa scores have changed little while in all the years I have been on pred and are good, If they deteriorated I would agree to something, Do ask about the other options.

[DorsetLady PMRGCAuk volunteer]

given the potential horrendous side effects of Alendronic Acid

Think the word in there to consider is “potential”. To be honest every drug has “potential” side effects - doesn’t mean you will get all, or even any of them.

If you have osteoporosis then you have to weigh up the pros and cons…and severe osteoporosis may leave you in a great deal of pain and in a wheelchair for the rest of your life.

I took AA for four years whilst I was on Pred because I fell into the category of being likely to develop osteoporosis for various reasons - fortunately it didn’t develop and had no side effects from the medication whatsoever.. and today, 7 years after taking last tablet still don’t.

You may not require it, and the Calcium/Vitamin D supplement may suffice - hope it does. Certainly AA doesn’t suit everybody but I think you are demonising it unjustly.

Like you I had GCA - with high doses of Pred early days (due to sight loss) - and high doses are one of the reasons why AA a needs to be considered.

Have a look at the ROS website - and speak to one of their advisors if you are that worried -

theros.org.uk

Just as a matter of interest what are your readings from the DEXA scan?

There is a lot if information in FAQs on Bone Health -

healthunlocked.com/pmrgcauk...

[Stellazero in reply to DorsetLady]

Thank you for your very helpful reply. To be honest the report on my bone density scans is long and beyond my understanding so I will discuss with my doctor and Rheumatologist. Thanks again for your knowledgeable reply.

[DorsetLady PMRGCAuk volunteer in reply to Stellazero]

okay, you may need to take something, but there are other options, so please do look at ROS site.

[papadapadoo]

My wife has been taking Fosamax for 5 years. The only effect is that her bones are stronger than they were. It's not a problem for everyone, but can be trouble if you have certain diseases or can't do sodium. You said "It has been recommended ..." if that was not from your doctor, you need to consult her or him.

[SheffieldJane]

I have Osteopenia that has worsened over an 8 year period, I am also frightened of the Alendronic Acid side effects. I have been urged to take it in the strongest terms. One GP said “ do you really want to spend your life in a wheelchair?” It must seem a marvellous drug to them that stops a patients bones literally crumbling. The reality and quality of day to day life with these side effects doesn’t figure in their thinking. People on the forum have got on all right with it. Certainly I would make sure that there were no issues with my teeth before I took it. I think I may relent if my bone density has worsened further though. I just think what a burden I would be to others if I couldn’t get about. I knowingly and wilfully took Pred knowing that this was a major side effect and must pay for the mobility and pain relief I have enjoyed. I have always taken vit D and vit K and I love milk and cheese, the weight bearing exercise won’t be sufficient. I may be one of the lucky ones, who knows. So I’d take it.

[Arabianmynx]

I have been taking AA for a year and for me there’s been no issues with how I feel, but have no idea if it is having positive effect!

[Pollyanna16]

I refused AA as I had taken it before & had stomach issues! I was offered Zolandronic Acid infusions once a year instead (for 3 years) & recently received the good news that my bone density had improved & will not need another infusion. A review will take place in 3 years if I remember correctly. I also take AdCal & exercise regularly. You could explore this alternative, the infusions were straightforward & I didn’t have side effects. I am on a low dose of 3.5mg pred. All the best.

[KingWilf]

I have been taking AA for a month, since just after my PMR diagnosis and starting on pred. I also take Calci-D. So far I’ve had no issues. I’ve had bone density issues in the past, and taken it before without issues. I’m going to ask for another DEXA scan tho, just to get some sort of baseline, and the results of that may change my decision to take it.

[Missus835]

No advice on AA but rheumy wants me to take it. Nope. Already too much junk going into this body. I do have osteopoenia. Right now for whatever it's worth I am incapacitated with muscle spasms in back front ad hips and tahing ibuprofen/tylenol for that as Pred doesn't touch it. Using walker and can barely sit 5 mins. Although drugs help I'm tired of popping pills. This is Week 2 in bed mostly mornings are the worse.

[montebello]

My worst T scores were -1.6, and actually improved since the previous year. This fact, along with stomach problems when taking AA for a month or so, caused me to stop taking it. Next year, if my t scores are significantly worse, I'll consider it again.

I'm NOT an advocate of pills unless they are obviously needed.

[LucilleG]

I have been on Apo-Risedronate DR (delayed reaction), 35 mg once a week, since July 2022. I had a bone density scan in late May 2022 and it showed I had osteoporosis in my spine (osteopenia in hips and femur - I think I have my bone scan measurements in my bio). After doing a lot of research, I decided to take the medication. I have had no problems so far.

(I was diagnosed with PMR in late May 2021 and started on 40 mg of Prednisone. I am now on 5 mg of Prednisone.)

I am going to ask to have another bone density scan done in May 2024. Hopefully, I should be on a lower dose of Prednisone by then.

[Orange_2022]

I adamantly refused AA as it sounded scary and I hate taking drugs. 7 months into taking Pred I finally asked for a Dexa scan (after the GP prescribed AA anyway!) and found out that my T scores show osteopenia.

So I've given in reluctantly but 5 weeks in have had no issues with AA - it's one small tablet once a week and I get up early to take it with a glass of water (and I'm enjoying that quiet hour first thing in the morning). So far so good!

Before I started taking it, I rang the Royal Osteoporosis Society for a chat with one of their very helpful nurses (think this was something PMRpro had recommended as an information source - thank you Pro!). They were lovely, very helpful and put my mind more at rest about the worst of the potential side effects.

theros.org.uk/

[PMRpro Ambassador in reply to Orange_2022]

Virtually all of us have osteopenia at our age. It is all a matter of degree. The normal range is better than -1.0, -1.0 and worse is osteopenia, -2,5 or worse is osteoporosis. Those figures are purely arbitrary - but there is a massive difference between -1.1 and -2.5 but would all be termed osteopenia.

[Orange_2022 in reply to PMRpro]

Yes... mine is -2.4 (spine), -2.4 (femoral neck), -1.4 (hip). The nurse at ROS told me (if my slightly foggy memory is correct) that this was benchmarked at average maximum bone density (in your 30s) and I'm hoping my bones were in fairly good health then due to exercise and a high calcium diet! Made me feel a bit better anyway... 🙂

[PMRpro Ambassador in reply to Orange_2022]

The -1.4 is good, the -2.4 for the femoral neck is a bit dodgy, almost osteoporosis and that is the fracture they worry about in the elderly. Spine is almost always a bit lower - not sure why.

The figures are relative to what is average in your 30s.

[Stellazero]

Thanks for all your very helpful advice and comments. I have decided that on balance I will take it and monitor the effects, hopefully I will be ok and continue taking it, however, if adverse effects result I will consider stopping and seek advice as to alternatives. I took the first today. Thanks again Julian