Bones

[Suzan62]

Called for test results of bone scan yesterday and apparently they’re all normal. I have an appointment with doctor next week who is convinced I need to be taking AA but am I ok to carry on without it I wonder? Something that’s on my mind is that if I did take AA whilst taking pred I can stop taking it once I stop taking pred but if I don’t take AA and develop osteoporosis because of the pred then I’ll be on it for life, or would regular bone scans indicate the likelihood of developing osteoporosis (osteopenia) in time for it to be caught. I’m very active and walk lots and I really don’t want to take AA so I’m tempted to just carry on as I am. I’m on 6mg of pred at the moment following recent flare but alls going well and hoping to start slow reduction to 5 in the next week or two.

[DorsetLady PMRGCAuk volunteer]

From previous posts see you are on VitD/Calcium supplement- many find that it enough along with good diet and bone strengthening exercises to keep bone density in a good place - and your scan seems to corroborate that. Was there any comment on the report besides the actual readings and do you know what they are? Normal is a bit vague… always good to know actuals.

Many have readings that are considered osteopenia - but that isn’t osteoporosis nor does it necessary automatically mean you will get to those levels.

As for regular scans - that’s not always as easy as it sounds. You may be lucky in accessing them on a regular basis, but it’s not the case everywhere.

Most damage is done to bones on high doses of Pred - or very long term use.

I’d ask for actual readings, and once you know what they are [and unless there is a family and/or personal history that makes you more susceptible to, osteoporosis] I’d say -thank you, but no thanks for the time being, but I’ll keep it in mind.

I took it for 4 years with no problem whatsoever -but I had GCA so high doses and fell into the susceptible group requiring protection.

My view is, if you really need it then take it, if you don’t need it then why add in another drug with its own issues.

You can always look at the ROS site, or contact their helpline - very good -

theros.org.uk

[Suzan62 in reply to DorsetLady]

Sorry I’ve only just noticed this reply. Yes I am taking Vit D and Calcium. My diet is generally good and I walk lots. The receptionist did tell me the readings, they are as follows:

Left hip neck: BMD 0.778, T Score -0.6, Z Score 0.7 Result normal.

Left hip total 0.962, T Score 0.2, Z Score 1.2 Result normal.

Spine L1, L2, L3, L4 BMD 0.953, T Score -0.9, Z Score 0.7 Result normal.

I’m going to see GP tomorrow and I will ask for a copy of the report so that I have all the information and in case I’ve taken anything down incorrectly as she read it out fast and I scribbled it down quickly.

Thank you for your guidance, as always it is extremely helpful and reassuring 🙏🏼

[PMRpro Ambassador in reply to Suzan62]

If those t-scores are correct then any doctor wanting you to take AA is out of their mind! They not only normal they are little different from the average in a 30 year old. All you need is a decent diet with plenty of calcium, exercise and vit D. You are way past the pred doses that are really risky

[Suzan62 in reply to PMRpro]

Really. I hope I did take them down correctly then and glad I said no to the AA and requested the scan. Be interesting to see what he says tomorrow. Thank you 🙏🏼

[Suzan62 in reply to PMRpro]

Saw doctor and obtained printout of bone scan results. I had taken the readings down correctly. It also states that additional treatment is unnecessary at present and doctor didn’t even mention AA, just said to continue with the Calcium/Vitamin D. I’m so pleased. Thank you all for your advice and support 🙏🏼

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

That’s good news….

[Charlie1boy]

For what it’s worth, my GP allowed me to come off AA when I got to seven mg a day of prednisolone.

I was never offered a dexa scan - indeed, I never was told anything about it - but I always felt my bones were ok, and I’ve never had a problem since ( this was all about six years ago).

I think you’ve got good advice from DorsetLady.

Good luck.

[PMRpro Ambassador]

I had a good dexascan result, osteopenia at a level that was considered OK and didn't take AA, saving it for if it was needed. My bone density didn't change significantly in the following 13 years so I never took it.

I had a spinal xray in December that identified a possible compression fracture and as a result I have started the course of zolendonic acid infusions, 3 infusions a year apart. I find the thought of that far preferable to a weekly AA tablet with its potential hazards over a period of 13 years!

The worst effects are at high doses - if I had got to 6mg and had a good dexa, I wouldn't start on AA.

[Suzan62 in reply to PMRpro]

I agree and understand why you made that decision. I was of the mind not to take it so I’m glad you’ve said that as I feel more confident not taking it now. Hope the infusion works for you 🤞🏼

[piglette]

I have a doctor who was determined I should take AA even though I had a very good, positive score. Every time I talked to him he used to go on about me taking AA. I then saw a consultant who happened to say I did not need it and my doctor has not said anything since!

[Suzan62 in reply to piglette]

I’m pleased to hear that and glad he’s not mentioned it since 👍🏼

[Sharitone]

Despite reasonable dexa scan results, I developed 3 spinal compression fractures. Because dexa scans do not tell the full story. Goodness know how many fratures I would have if I had not had some kind of bone protection. 'having said that, of course, AA does wreak havoc with the stomach.