Osteoporosis, dexascans and steroids

[MaryWR]

I have PMR and have been on prednisolone since January. I am now on 10mg down from the original 15. I am having a gentle battle with my GP. My consultant put me on alendronic acid (without a dexascan). After five weeks I started to get discomfort in my oesophagus when eating so I came off it. The GP wants me to stay on it and implies that osteoporosis is almost a foregone conclusion. I pressed for a dexascan and have now received an appointment in three weeks time. I was hoping to have the occasional dexa and only take the drug if I have to but he says that dexas can't be repeated very often. He says this is for safety but I suspect cost may be the issue.

I think I have read somewhere on this site that not everyone develops osteoporosis and those who do usually develop it within a certain time frame - fairly early on? If my scan comes back negative can I assume it's safe not to take the alendronic acid? Should I ask for another scan in the future and how long should I wait?

This site is my lifeline so thank you everyone for the constant support and reassurance.

[Celtic PMRGCAuk volunteer]

Just lost my first reply to you, Mary so a brief one now (have a busy day ahead). Demand that DEXA before being cajoled into taking AA. I was also refused and paid for the first one - result normal. Over five years down the line and a starting dose of 40mg, repeat scans showed just the tiniest amount of bone thinning into the osteopenia range affecting the spine only but no medication prescribed or needed. A repeat scan two years after stopping steroids actually showed increased density. Due to a misunderstanding between my rheumy an GP, I wasn't even prescribed the recommended calcium plus Vit D. I did include lots of calcium in my diet daily, including 'live' yoghurt, milk, and cheese a couple of times a week. I also walked daily, even if only 10 minutes at first but gradually building up as the pain allowed. I also joined Tai Chi/Qi Gong and Nordic walking classes when on the lower steroid doses. I appreciate this is one person's experience but I'm certainly not alone in reaching zero steroids with my bones intact without recourse to AA or any other such drug. You only need it or similar if you have a diagnosis of osteoporosis, and to know that you will need that DEXA.

[MaryWR in reply to Celtic]

Thank you. That's really encouraging.

[piglette]

Mary if your Dexascan is OK you don't need AA it is recommended that you only take it for five years max anyway, so wait until you need it if

[piglette]

Sorry must have pressed GO! As Celtic says you should be taking vit D and calcium supplement as the steroids can cause reduction in bone density. Apparently this can show up quite quickly so your Dexascan should help to see what your figures are at the moment. Of course people get osteoporosis without taking steroids.

[Parijm]

My Dr started me on Alendronic and Prednisolone, also calcichew D3 at start in April 2014. I was not offered but asked for a Dexa scan a month or 2 back and my results are borderline. My wine consumption is probably more generous than it could be. I guess that justifies taking the AA. I don't appear to have suffered any problems with AA as far as I am aware. I am to have a further Dexa in 3 years. My daily diet includes live yoghurt, milk & cheese as well as oily fish and other foods that I hope will provide extra calcium. Hope this helps.

[MaryWR]

Thank you. Everything helps - it's so good to get everybody's views and experiences.

[jinasc]

Go to this page nhs.uk/medicine-guides/page...

Read up on the side effects.

You said ' After five weeks I started to get discomfort in my oesophagus when eating so I came off it.' - You did the right thing. It also has as a listed side effect ' muscle pain'.

AA is not the only drug available. Look on the National Osteoporosis website to read about the others available.

[MaryWR in reply to jinasc]

Yes it seems horrendous and I definitely don't want to take anything like that unless I have to. Thanks for the tip about alternatives. I'll check it out.

[Jackoh]

I have had the same gentle battle and after a telephone conversation with another doctor in the practice last week I politely but using "broken record technique", asked for a dexascan. I was told I must take AA. I repeated that I would like the dexascan first and I think after repeating myself a couple of times he got the message and is now arranging one. He also expressed his displeasure that I am on 12mg of pred and haven't got down below 10 mg. all good fun!!!

Jackie

[PMRpro Ambassador]

I took 4 tablets of AA before discussing it with a different GP who agreed with me about waiting until it was needed. Six years on and I still haven't taken any more - the repeat scan after about 3 1/2 years was pretty much identical to the first (done on different machines so not entirely comparable). It is not a foregone conclusion you will develop osteoporosis - only about half of patients do. However - the Fosamax drug reps did a brilliant marketing job and doctors think taking pred equals crumbling bones. It doesn't - and another point of the marketing was they claimed it had next to no side effects. It does - and some are pretty nasty so the FDA now says "limit use to 5 years".