PMR treatment and effects on osteoporosis

[arctowellness]

I was diagnosed with PMR in Jan 2023 and have just completed the weaning of prednisone over the last year. As soon as i stopped taking the final 1mg of prednisone in December 2023 - my symptoms started to return. In the path of trying to figure out my diagnosis, i also found out i have osteoporosis. My ENT does not want me on prednisone due to its negative effects on bones. I am interested in hearing about people's experiences related to this

[Koalajane]

Have you had a bone density scan to see how your bones actually are.

My scan showed my bones to be normal so I take d3/calcium and k2.

I am not at all surprised your symptoms have come back - they probably had not gone away!

Good luck to you

[piglette]

As KoalaJane says get a Dexascan. After six years my bone density is still like something resembling stainless steel!! Also you really don’t want to be in pain, because someone does not like steroids, why did they give them to you in the first place if they felt like that? Many thousands of people take steroids long term for PMR and GCA and the vast majority will take them for well over a year.

[DorsetLady PMRGCAuk volunteer]

My ENT does not want me on prednisone due to its negative effects on bones.

That’s as may be - but

a. How bad is your osteoporosis- are you taking medication for that? and

b. Is your ENT aware that untreated PMR can cause an awful lot of damage, maybe leading to GCA- and as you’ve already discovered it hasn’t gone away.

You need someone who is more aware of PMR

[arctowellness in reply to DorsetLady]

I completed a dexascan and was diagnosed with osteoporosis (beyond osteopenia - numbers -2/5ish, can't remember all the numbers right now). I had a reclast infusion last spring. The endo doc didn't like that i was on prednisone. I continued to wean successfully, but now have symptoms. I haven't reached out to my rheumatologist yet.

[DorsetLady PMRGCAuk volunteer in reply to arctowellness]

Well you need to speak to Rheumy….

[PMRpro Ambassador]

To have tapered off pred in a year is a clue: fewer than 1 in 5 are able to do that. PMR is a chronic illness that lasts for a couple of years if you are lucky but may need more like 4 or 5 years to be able to taper off pred altogether. It is not something you take a defined course of pred for, job done, it is a rheumatological disorder where you use pred to achieve remission of symptoms by using a higher dose than you are likely to require longterm and then you taper to find the lowest effective dose to use ongoing.

I think it is fairly likely that you need well under 5mg, possibly as little as 1 or 2mg and your ENT is being a bit silly because without it you will end up back in the same state you were pre-pred, immobile and with rampant uncontrolled inflammation in your body - neither of which are good for bones or any of the rest of your body. There are medications that improve your bone density which can be taken alongside pred so your bones are protected and your PMR controlled. But doctors have to work together over the management of the chronic patients - and to refuse you pred would be cruel and unnecessary.

I think this is one of the most important documents relating to PMR and GCA in the last few years - you need to show it to the doctor who diagnosed you with PMR but obviously isn't aware of the optimum management approach.

This early after stopping pred, you could probably try taking 5mg pred and see if that is enough to manage the inflammation. As I say, I suspect you may well get lower than that before you are stuck - the technique is to taper slowly - 1mg per month is the absolute maximum and 1mg per 2 months is better until you feel the symptoms aren't being well managed. Then you return to the previous dose, You try another 1/2mg after a couple of months - if it succeeds, great, you try another 1/2mg. If it doesn't, you wait another couple of months and try again. It may not work - but at under 5mg you are on a relatively safe dose and have time to wait for PMR to go into remission. Which it does for over 90% of patients sooner or later - but you don't know when until it happens.

ard.bmj.com/content/83/1/48

[arctowellness in reply to PMRpro]

thank you!

[Bugloss in reply to PMRpro]

Thank you, PMRpro, for the T2T article. Good to know there is so much research happening. Just picked it up today as I'm fairly new to the chatroom. I am fortunate in my rheumatology department here in Hereford. I've had nothing but kindness and humanity from consultant and registrar. Can't say the same for GPs! I'm in the illness for the long haul, already in my 6th year GCA/LVV, and steroid on 17mg following reaction to flu jab in October. Slow, slow reduction now. Bones, muscles, digestion – a philosophical approach the only one to take. At 82 I'm grateful for what I have.

[PMRpro Ambassador in reply to Bugloss]

I was born in Hereford! Lived the other end of the country though.

[Reedmaker in reply to Bugloss]

I am under rheumatologist in Hereford too and find her very kind, non judgemental and listens to me.

We are lucky.

[Bugloss in reply to Reedmaker]

Glad to know the Hereford connection! It is a beautiful county, lots of good things and good-hearted people. But this nasty, almost invisible disease is tough to cope with wherever you live. I have had to downgrade my expectations over the last few years substantially. I'm so grateful for Health Unlocked and this community of fellow sufferers and for all the good advice I've been finding.

[agingfeminist]

PMRpro and DorsetLady will give you the best advice you will ever have. Good luck.