PMR Newbie

[Raefinn]

After months of lingering on Naproxen, I was finally diagnosed by a rheumatologist (privately) with PMR. I was give the 120mg steroid injection there and then , and felt better the next day and for the next few days. However, once the Naproxen was out of my system, the symptoms have started to come back, to a lesser degree. I am eight days out from the injection, and not yet on oral steroids. I have read the injection works better on people of smaller size, which I am not. Does anybody have any advice, or should I go back to the rheumatologist?

[SheffieldJane]

My guess is that the injection is wearing off. I would expect the Rheumatologist to put me on an on-going oral dose of Prednisalone. Naproxen is not prescribed with Pred, it would be harmful to your digestive system. I would see the Rheumatologist as a matter of priority.

[Raefinn in reply to SheffieldJane]

Thank you for that, I will get back to him as soon as.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Think you need a more usual approach - so a trial of oral Pred if Rheumy isn’t 100% it is PMR… and yes you do need to go back to him.

Bit more info on your symptoms and lead up to Rheumy visit might help us as well please.

[Raefinn in reply to DorsetLady]

Symptoms started with hip pain, getting out of sun lounger on holiday in September 2023, I thought it was sciatica, about a month later I got pain first in left upper arm, then right upper arm, carried on with otc painkillers, till I was at the maximum I could take, phoned the doctor early January 2024 , where the physicians associate immediately put me on 5oomg on Naproxen twice a day. I had esr blood test, urine test, the results of which were "fine". I carried on for another two months, requested more help, got another blood test, urine test, xray and self referral for physiotherapy. Again, no red flags. Xray showed mild anterolisthesis on C4 over C5, which was then decided to be the reason for all the pain, including the hips. Still on Naproxen when I got to see the physio at the end of June, he said the anterolisthesis was too mild to be causing the pain. He gave me exercises which I found too painful, and after seeing him again a month later, I decided to go see a rheumatologist privately. Diagnosed with PMR, had 120mg steroid injection then. At no point have I seen anyone face to face at the GPs, its all done over the phone.

[DorsetLady PMRGCAuk volunteer in reply to Raefinn]

Sounds very PMR ish -and know all out bloods being “fine” and also taking maximum otc meds (mine was GCA though).

As said, although steroids injection may work for a while -they diminish over time -and with PMR you need a steady daily dose. Albeit that once initial inflammation is under fine-you do reduce as time goes on.

So back to Rheumy -suggest oral Pred and take it from there. He may be able to take you on as an NHS patient- if he does both -or refer back to GP Good luck..

Maybe have a read of this as well -

healthunlocked.com/pmrgcauk...

Please let us know how to get on.

[PMRpro Ambassador]

Go back - if Naproxen is that effective, there is a good chance this may not be PMR but an inflammatory arthritis with a polymyalgic presentation and that needs to be assessed. A few people have had this sort of experience. But initially, you possibly needed some oral pred too to manage PMR well on depotmedrone injections. If it is PMR.

[Raefinn in reply to PMRpro]

Thank you for your help, I'm at a bit of a loss at the moment, but I've got another appointment for the rheumy, hopefully things may be clearer after that.

[PMRpro Ambassador in reply to Raefinn]

Good. But on the basis of what I queried - ask if they are sure it is PMR and only PMR.

[Raefinn in reply to PMRpro]

I will do. The difficulty is the lack of blood/urine test proof. My fear is that I may have to come off all medication in order to get clear results.

[PMRpro Ambassador in reply to Raefinn]

Only really for symptoms and they can see those. Blood tests other than ESR and CRP aren't really affected by medications and they aren't reliable in PMR itself. Imaging and other blood tests will still show the other possibilities.

[Raefinn in reply to PMRpro]

Thank you for that, I'll come back here once I've seen the rheumy again, but I appreciate the help and advice I've gotten today.

[piglette]

as the others say, if Naproxen works it probably is not PMR. Ideally you should take a pain killer for a week and see if that works, then try steroids for a week without anything else and see if that works.

[Raefinn in reply to piglette]

Sorry, I should’ve been clearer, the naproxen worked brilliantly at the beginning, the gradually the pain crept back. I was on naproxen and cocodamol with paracetamol , and I was still sore. That’s the reason I finally went to see a rheumy, cause the gp would probably put me on stronger painkillers

[AtopicGuy]

You don't say where the injection was, nor which steroid was injected. I could guess, but it's not wise to assume.

[Raefinn in reply to AtopicGuy]

I only know it was 120mg of steroid, in my bum.

[AtopicGuy in reply to Raefinn]

It's worth finding out. Different steroids have different potencies, and stay in the blood for varying amounts of time. Injection into the buttock is unusual for PMR, but not unheard of. See this study from 1991, which used methylprednisolone:

ncbi.nlm.nih.gov/pmc/articl...

Methylprednisolone has 125% of the potency of prednisone or prednisolone. However, when injected, it's out of the system within a few days, so the symptoms often return well before the next shot. That's why it's less likely to cause long-term side effects than a course of daily pills at a much lower dose.

[Raefinn in reply to AtopicGuy]

Thank you for that, I appreciate the help, I will see what the rheumatologist says. I am due to start oral steroids at some point, hopefully sooner rather than later.

[AtopicGuy in reply to Raefinn]

It's possible the injection is intended to help rule out other disorders before finalising the diagnosis.

Another thing worth asking about is your blood tests. The vast majority of PMR patients begin with elevated readings for C-reactive protein (CRP) and/or erythrocyte sedimentation rate (ESR). These show that the immune system is fighting something, but raised CRP and/or ESR can be caused by acute (short-term) injuries and infections, as well as chronic (long-term) autoimmune diseases like PMR. It would be poor practice to begin oral steroid therapy before the alternatives are ruled out. Waiting a few weeks for the immune system to calm down is part of the process.

[PMRpro Ambassador in reply to AtopicGuy]

The dose of 120mg fits with the standard deep i,m. depotmedone injections commonly used in rheumatology for speedy relief of inflammation where 3ml of a 40mg/ml solution are given.

medicines.org.uk/emc/files/...

[AtopicGuy in reply to PMRpro]

True but, as I said: "it's not wise to assume". Raefinn doesn't know what she was injected with, yet.

[PMRpro Ambassador in reply to AtopicGuy]

Well it was a 120mg dose of a steroid. It wasn't anything else.

[AtopicGuy in reply to PMRpro]

Could be hydrocortisone, of which 150mg is equivalent to about 35mg of prednisolone, and it wears off twice as fast as well.