Rheumatologist says I'm too young for PMR and I h... - PMRGCAuk

PMRGCAuk

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Rheumatologist says I'm too young for PMR and I have reactive arthritis following viral infection

IncogEve
IncogEve

I've given a run down of my history on my profile.... in brief, diagnosed with PMR in Dec 2019 and barely mobile at one stage. Was put on 15mg Prednisolone with prompt relief of symptoms and referred to Rheumy because of my age (52) to exclude other conditions. Rheumy had me taper to 2.5mg and been holding there through lockdown. Kept a record though and notices return of some symptoms at 7.5mg but not debilitating like at first onset. Lately feeling aches and fatigue daily and have a tightness of jaw and throat.

I had a telephone consultation with the Rheumy today and she says she never thought I had PMR but says it is likely to be a reactive arthritis arising from viral laryngitis. She wants me to come off the Pred over the next few weeks. She has requested some blood tests again to do a final check for inflammation markers but says she isn't expecting to see any. She did mention my kidney function was slightly reduced on last tests and will look at that again. I said I would consider reducing Pred once the results from the bloods are back and if she could tell me how to cope with current (PMR-like) symptoms. She says it is 'chronic pain' which sounds a lot to me like 'live with it'. Finally, she advised me to see my GP regarding the jaw - could be TMJ. Feeling like I've been left hanging. Will have to see what latest bloods reveal...

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PMRpro
PMRproAmbassador

WHY are you too young? The BSR guidelines say "over 50" and the NICE ones say "over 40".

I'm darned if I can see why anyone should be told to live with chronic pain if a low dose of pred manages it. Especially if they will hand out more standard pain killers like sweeties.

I lived with classical PMR pain for 5 years - looking back I don't know how I did it and I know I couldn't do it for long now without chucking myself in the river outside the house.

I was 54 when diagnosed, following an MRI scan and four months of agony, I started on 15mg of Pred on the 25.05.19 and I have just managed to get to 5mg on my second attempt thanks to the slow taper as advised on this forum. My Doctor just advised me to listen to my body re adjusting dose but no real advice. I have blood test once on new dose but last time I got to 5 the inflammation markers were ok but I started to get alot stiffer again! It must be so frustrating for you when you get the feeling that health professionals do not fully understand the complexities of this condition and how differently it can affect each of us. Good luck with your journey and I hope you get the answers and relief you need. Xx

I was 46 when I was first diagnosed and it went into remission. Came back with a vengeance when I was 54. Been 4 years on Prednisolone now. My Rheumy knows I have osteoarthritis but also thinks that I have another inflammatory condition too. He's making sure I am not in pain and has adjusted my meds to make sure he's treating the inflammation and the pain. No one should be left to cope with inadequate pain relief. I would be asking my GP to refer for a second opinion or a specialist pain clinic at the very least!

PMRpro
PMRproAmbassador in reply to S4ndy

"He's making sure I am not in pain and has adjusted my meds to make sure he's treating the inflammation and the pain"

Which is what it is all about isn't it?

S4ndy
S4ndy in reply to PMRpro

Absolutely! Pain=misery. I am very lucky to have good GP and Rhemy. Also help by my CRP levels reflecting my pain level which doesn't happen for everyone.

I was 56 when I was finally diagnosed but I think I had it a few years before that. It's so frustrating and scary when nobody takes you seriously. I managed to taper down from 15 to 5.5 in 19 months but have just had a flare so am back upto 7. With the great advice of PMRpro I am now going to try the very slooow reduction plan.

Good luck , the advice and support from this group is brilliant.

You are not too young! I was 51 when diagnosed. .your symptoms were classic. If you are now experiencing tightness of Jaw and Throat am hoping things aren’t progressing to GCA. One of my main symptoms of GCA which I developed 6 years into PMR was hoarseness. My advice would be to find someone who knows about PMR and arm yourself with information. I must be getting older, I get more and more peeved at medical folks who don’t listen and think they know everything!

A consult with your GP is definitely in order. Hopefully he/she is one that you can get along with. I think your rheumy is a quack. After 3.5 years I'm on my 3rd rheumy and have very little tolerance their god-like statements. Rheumy #3 wanted me to reduce pmr at a speed that would have guaranteed a flare up. We fought and he finally agreed to let me reduce at the speed I was confortable with. Recently I made it down to 3 mg and the rheumy said I could put my feet up on the desk and take 3 mg for the rest of my life and he'd be fine with it! He's correct but first he wanted me to reduce at the speed of light and then said it was no rush to reduce. Covering all his bases I think. Obviously the only reason I keep going to him is so I keep my prednisone prescription. I certainly have little faith in him. I would have little faith in your rheumy too. I live by the mantra I learned from PMRpro - I take the lowest effective dose that keeps the pain away or at a minimum and I am in no rush to get down to zero mg. It's quality of life that matters - not the schedule that the rheumy read about. You are the one in pain - not the rheumy. Take control.

Hidden
Hidden

I hate to say this and I'm not a doctor so be that as it may. I was diagnosed with reactive arthritis 30 years ago. It was more localized to my back and spine. My hips and knees were also painful. Reactive arthritis usually goes away when the infection is treated. It can recur and it did. It can also become chronic but my understanding is that isn't common.

Twenty years later at age 53, I was diagnosed with PMR. It was distinctly different than reactive arthritis. The PMR pain that I experienced started in my shoulders and I couldn't lift my arms. Then the pain spread everywhere. At the time, it was assumed to be a flare of reactive arthritis. It took a year or two to sort things out.

What you are describing sounds more like PMR. It can be both PMR and reactive arthritis but that might be more like getting struck by lightening twice.

Thanks all, so reassuring to have input from those who have experience of PMR and with GP/Rheumatologists varying diagnoses.

Started reading up on reactive arthritis and - I'm no doctor - but that diagnosis doesn't seem to address my PMR type symptoms...

PMRpro
PMRproAmbassador in reply to IncogEve

It s beginning to be thought that one form of PMR is also "reactive" - but inflammatory arthritis affects joints, PMR has different joint effects, due to synovitis but not usually causing heat and swelling.

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