Advice from the awesome "aunties"

[Hollyseden]

Doctor has asked me to reduce from 15 to 12.5 Pred, get blood tests done in 3 weeks and see her again in 4 weeks. Having read quite a lot here about tapering slowly I thought i would try the dead slow method. Is that relevant at this dosage? Sorry if this sounds a silly question, just wondered if I need to do slow taper at this stage or should wait till down to 10mg? She also said rheumatologist wants me to start on alendronic acid and I don't like that idea. Doc had used some formula to calculate my risk fracture at 6.5% This is all Greek to me so would appreciate if you could 'translate' it for me. Thanks again

[jinasc]

If your bones are OK, you need nothing. If you do need something, go to the National Osteoporosis Society website and read up on them all and choose, it does not have to be AA.

The rule for many years by top experts is nor more than 10% at a time whatever dose you are on. Once down to 10mg, it becomes harder so the reduction plans were devised by patients for patients and they are now part of a 'Fact Study'.

The following is a personal decision, it is up to you to decide.

I would do a 10% reduction but follow the plan............then when down to 10mg still follow the plan but with 1mg at a time.

You can get both plans free of charge, by emailing [e-mail], Subject heading reduction plans and a copy of page 4 about the 'fact study'.

[DorsetLady PMRGCAuk volunteer]

Hi,

You can do a slow taper at any time, but most find they don’t need it until they get to lower doses.

Like jinasc suggests I would try 1mg tapers rather than 2.5mg suggested by doctor - it’s nearer the 10% recommended.

My taper is a bit quicker than those suggested by jinasc, but it really up to you, whatever you feel comfortable with.

1st week - Sun & Thurs new dose -Mon, Tues, Wed, Fri, Sat old dose

2nd week - Sun, Tues & Thurs new dose -Mon, Wed, Fri, Sat old dose

3rd week - Sun, Tues, Wed, Thurs new dose -Mon, Fri, Sat old dose

4th week - Sun, Tues, Wed, Thurs & Sat new dose -Mon, Fri old dose

5th week - every day new dose

Check if you actually need AA, but you should be on Calcium&VitD tablet, most find that sufficient.

[PMRpro Ambassador]

The slow approach is relevant at any dose if you need it. I would try the 15 to 12.5mg step and see how you get on - if it works that is good. If it doesn't, then quickly go back to 15, settle down again and then reduce 1mg at a time.

Before taking AA tell your doctor you want to have a dexascan done to see the state of your bones now. I have never taken AA - my dexascan showed my bone density was good and not requiring AA. In 7 years of being on pred it has barely changed and all I have taken is calcium and vit D supplements. By no means everyone has a problem and since AA should only be taken for an absolute maximum of 5 years, preferably less, it is worth checking if you really do need it now.

[Hollyseden in reply to PMRpro]

Armed with info from here,I did ask about dexascan, that was when GP said about the 6.5% risk which she had already mentioned previously, saying that was good? Must have got that from blood tests. I had early menopause due to chemo in my 30s and got Adcal then but stopped taking it years ago. Taking calcium/vitD now and don't want AA if I can avoid it. Also waiting for 24 hour monitor of BP because it's been acting up. Such fun 😋

[PMRpro Ambassador in reply to Hollyseden]

Keeps you from wearying - as the Scots say...

[Hollyseden in reply to PMRpro]

We do indeed! 😁

[Nidgey in reply to Hollyseden]

The 6.5% risk score will have been done by using the FRAX on line scoring tool, which evaluates the 10 year probability of bone fracture, not from blood tests. I think nowadays it is often used in conjunction with the DEXA scan scores to determine if treatment is required, or as a stand-alone assessment if DEXA scans are not available.

In my area, if you are on steroids you can have a DEXA scan every 2 years. Or even sooner if on very high doses of steroids , as some people can loose bone mass very quickly on steroids. Our Rheumatologist is keen that all patients have a baseline DEXA scan when they start steroids, and only starts Alendronate if they are already osteoporotic.

[PMRpro Ambassador in reply to Nidgey]

How nice not to have to fight for the correct approach!

[Hollyseden]

Thank you Nidgey for explaining the scoring tool. Like many things, it had me bamboozled,am I right thinking 6.5 is an ok score then? Also have decided I'll try the 12.5mg for a month and see how I get on with it. Maybe I'll cope with that reduction till I reach 10mg then do the Dead Slow after that. All the stuff I've read on here will make sure I watch out for flares. Onwards and Downwards she says with fingers and toes crossed. Thanks again for sharing your knowledge and advice.

[Nidgey]

As I understand it, the score result outcomes vary according to your age, and if you have had a previous fracture. Therefore I don’t know if it is low risk or not!

You obviously have the additional risk factor of having an early menopause (under the age of 45). DEXA scans are not an expensive test. Is it worth asking your GP again, telling her you are worried about this and would like a baseline measurement with having both steroids and early menopause as risk factors? Having a DEXA is meant to be best practice.