Six years into PMR. What should my GP be testing me for?

[scrambledegg]

I have had PMR for 6 years and have never successfully got below 10mg per day. I recently tried a DSNS to reduce to 9mg over 2 months and I just couldn't do it. 10 mg is where I really need to be. I am so lucky that I have few and minor side effects and am happy to stay at 10mg to maintain my quality of life.

My GP has recently requested a review. I had a dexa scan and blood test when I was first diagnosed but nothing since then apart from an annual face to face review (luckily she's happy for me to do my own thing with dosage) and blood pressure reading. I'm thinking I ought to get another dexa scan despite the fact I have been taking calcium and aledronic acid, and another blood test to check blood sugar/thyroid/liver and kidney function/potassium and sodium levels.

Any thoughts on the above and anything else I should ask for at the review? On past experience all I'll get is a "chat" and maybe a blood pressure reading if they will see me face to face rather than over the phone.

Thanks in anticipation. I just love this site and read the posts daily - it's such a mine of information.

[DorsetLady PMRGCAuk volunteer]

How long have you been on AA? Recommendation is to review it after 5 years - From medication information leaflet -

“Alendronic acid is generally prescribed long term, so you need to be happy it is the right option for you. To get the full benefits, alendronic acid should be taken regularly as instructed by your doctor or pharmacist. It is recommended that your treatment is formally reviewed by your doctor after five years.”

Another DEXA scan would seem sensible - but not sure when you’ll get one through NHS in current situation. Also bloods as you suggest.

[scrambledegg in reply to DorsetLady]

Thanks. I will ask her about Alendronic Acid. I have been tailing it off a bit actually. And I'll ask for a blood test.

[PMRpro Ambassador]

Another long haul patient by the sounds. I really think they need to do some proper investigation about us! I think a lot of us don't absorb anywhere near all our pred - and that has a massive impact on our perceived dose. If you can get one dexascan is always good - but the one thing I would say is that, if you have been on AA for all the six years, it is probably time to request a drug holiday in line with current thinking about avoiding the potential long term adverse effects of AA forming a different structure of bone which is actually more brittle.

[scrambledegg in reply to PMRpro]

Thanks. I'm definitely going to suggest I have a break from Alendronic Acid. If she agrees then I presume regular dexa scans are more important?

[PMRpro Ambassador in reply to scrambledegg]

womenshealthnetwork.com/com...

is relevant. Just popped up in my inbox as it happened.

I don't think there is a lot of point for dexascans more than every couple of years

[piglette]

Good luck getting a Dexascan, Covid has taken over everything. Blood tests seem to be at a bit of a premium in my area too unless desperately necessary. Have you tried reducing by half a mg, I find it impossible to reduce by a whole 1mg? Perhaps alternating it between 10mg and 9.5mg rather than going straight to 9.5mg.

[scrambledegg in reply to piglette]

Reducing by half mg was going to be my next step after a break of a month or so. I've even bought a pill cutter in anticipation! If I can't reduce half mg in 2 months then I 'm just not ready to reduce.

[piglette in reply to scrambledegg]

Good luck, give it a go.

[scrambledegg in reply to piglette]

👍🤞😊

[ann55carol in reply to scrambledegg]

I have been taking 15 mg for over 2 years now. I I have tried reducing by the methods on the site. I have only tried with 1/4mg, And that was not successful so now I’m staying on 15 as other health problems not related to the prednisone and have occurred

[ChinaWuntoo]

I asked the same question about DEXA on the Forum. Helpful reply from TheMoaningViolet which I may need to follow up when speaking to my rheumatologist.

DEXA scans are available at ORYON IMAGING in London if you are nearby. Their website is helpful.

[scrambledegg in reply to ChinaWuntoo]

Thanks

[HeronNS]

This: uptodate.com/contents/clini...

Differential diagnosis about halfway down the page.

[tangocharlie]

Hi fellow long-termer! Sorry we are both still members of the PMR club. I started a thread recently trying to gather info about us to give to my rheumatologist. Please add your experience to it:

healthunlocked.com/pmrgcauk...

My own theory is that us L-T peeps are a bit special and not like the ones doctors uusually deal with. I could never get below 5 and everything I did to do so has made things worse. My rheumy has pretty much scotched all talk of my PMR ever going away and we are looking at some kind of maintenance strategy. Although it may still go, in a study 97% of people were off steroids in 10 years.

Last year I switched to depo medrone injections and have also written a post about that. Initially they worked fantastically and were bringing the CRP down and symptoms under control, much better than steroids ever did. So 120m injections which average 5 mg of steroid per day was far more effective than 15-20 mg Pred, presumably because they are more directly absorbed by the body, or it could be the 'pulse' effect of a high dose that wears off.

Your GP shoud also be monitoring your BP and blood sugar levels and inflammation markers.

[scrambledegg in reply to tangocharlie]

Just looked up my medical records to add to your thread about long termers. I've in fact "only" had PMR for 5 years. At least it was 5 years ago I was diagnosed. And I last has a blood test 3 years ago so not so much monitoring going on. I will ask for a blood test this time. Will add to your long termers thread tomorrow. I have read it all now though - some of it sounds very familiar!

[PMRpro Ambassador in reply to tangocharlie]

And Matteson and co found some 40% were still on a low dose of pred at 10 years! Pays your money and takes your choice!!

[adl987]

My mom has been diagnosed with this for 3 years. Her severe pain has went away. She still has stiffness and some pain. She’s been on 10mg of prednisone and can’t wean off because her sed rate still remains double what it should be so the inflammation has never went away. She’s also on muscle relaxers and cymbalta. She did better on Celebrex but they don’t want her on it long term because of side effects. I’m at a loss of how to help her. Any suggestions?

[PMRpro Ambassador in reply to adl987]

If your mother gets better pain relief with an NSAID (Celebrex) AND can't reduce the pred dose then her doctors should be considering whether it is PMR she has. It really very rarely responds better to NSAIDs than pred but some of the alternative diagnoses will. Most inflammation will be improved with pred, not just PMR, but in some of the causes of PMR symptoms other drugs will work much better and with fewer long term problems.

[herdysheep]

I would ask for cholesterol check as well. They can do with the bloods. I think pred can raise the levels.

[scrambledegg in reply to herdysheep]

Good idea. I will, thanks