Update

[annieg1890]

Afternoon everyone... I am sharing in the hope that it helps.

I've been taking pred 2.5mg for about 3 years.. down from 20mg in 2015. Over this time I've had methotrexate jabs for a year and leflunomide for about a year too. all suggested by a great rheumatologist.

And whilst I was pretty ok, I still struggled in the mornings or after any exercise including dog walking.

I now take 2.5mg one one day and 3.5mg on the next day and so on. And I feel so much better. My current rheumatologist is useless! So this regime I decided myself

I recently had my second alendronic acid infusion, one more to go and hoping that my bones have improved too.

I am 60 next year and still hoping that my PMR will fade off into the mist!

Happy Sunday everyone x

[ImC_]

so I guess that, for you, 3mg a day is the dose you need. But you feel alternating helps?

[annieg1890 in reply to ImC_]

My thinking is that if I alternate then I'm not putting so much pred in my body!

[DorsetLady PMRGCAuk volunteer in reply to annieg1890]

Why not just take 3mg per day? If 2.5mg is just a tag too low..,

[ImC_ in reply to annieg1890]

but 2.5mg one day and 3.5 the next averages out at 3mg a day. Doesn't reduce the pred in your body.

[Nyci]

Sorry can't help you with this one .I was prescribed Alendronic acid but still sitting in the drawer ! Was worried about making my GERD worse as suffer already . Read that it can exacerbate this ...so for now ...taking my chances !

[PMRpro Ambassador in reply to Nyci]

If you have pre-existing GERD, then oral bisphosphonates are contraindicated and an alternative should be offered,

[Cliford37]

Hi annieg im on alendronic acid tablete once a week there was so much negativity around them at the time that i was hesitant to take them but i have for 5 years...i was told 5 years ago i could only take them for 5 years then would need to come off them but now the doctor says i can carry on taking them.. not sure if anyone else is over their 5 year mark of alendronic acid tablets...my hair is very thin is that the tablets ive no idea....Ive not had a bone scan for years maybe i should have one to see how things are....

Im 71......xxx

[PMRpro Ambassador in reply to Cliford37]

That's strange because the more recent thinking is that you should have a "drug holiday" after 3 or 4 years.

[DorsetLady PMRGCAuk volunteer in reply to Cliford37]

Usual advice is to have a rest after 5 years - and not sure how your doctor can say you should carry on with them without a recent DEXA scan to know the current density of your bones. You may be offered a different bisphosphonate depending the severity of your osteoporosis.

Would suggest you ask for one, and maybe look at the ROS webpage or ring the helpline - but they would probably ask for results of a recent scan and what other meds you are on now…doesn’t look as if you are on steroids for PMR or GCA which is why most on here are on AA. So your situation may be different

theros.org.uk

[Cliford37 in reply to DorsetLady]

Hi DorsetLadyThank you for your reply i will go back to the doctor then and request a bone scan.....im not on steroids or any other bone medication just adcal....i will look into it thank you...xxx

[DorsetLady PMRGCAuk volunteer in reply to Cliford37]

You’re welcome - hope you get things sorted.

[annieg1890 in reply to Cliford37]

Hi Clifford I started on the pills, but felt absolutely awful and was able to change to a yearly infusion. I was also hesitant at first but my osteopenia readings/results meant I had to address the issues before it got any worse. I have been told 3 years and then I will get a bone scan to see what the state of play is with me bones!

[Cliford37 in reply to annieg1890]

Thank you for your reply annieg1890 i have made an app for the doc in hope they will give me a bone density scan....xxx