I was eventually diagnosed with atypical pmr 7 years ago and put on pred which I've been on ever since. The pred certainly dramatically helped my initial symptoms and over the years I've been on the roller-coaster cycle of decreasing dose, flare, increasing dose etc. Of course, all these years on pred have had consequences for my body ( osteopenia and steroid induced cataracts). While most symptoms are resolved by increasing pred after a flare, one thing which has been constant is a very stiff and achy neck. I've only seen my consultant 3 or 4 times over the 7 years. On the most recent occasion we discussed the neck issue and he agreed to do an mri of my spine. I've just received a letter with the results. Apparently I have spondyloarthritis. What's more, the consultant thinks this is probably what I've had all along, but it wasn't visible on my initial mri. I'm not sure what to think. From what I've read, the spondyloarthritis is arguably a worse diagnosis because it doesn't go and can lead to permanent disability. There do seem to be some drugs that can slow the progression of the disease but of course, they come with their own lovely side effects.Has anyone else on here had spondyloarthritis mistaken for pmr I wonder?
My PMR has apparently "morphed" : I was eventually... - PMRGCAuk
My PMR has apparently "morphed"
I have had cervical Spondylosis, diagnosed for years, but having looked up the symptoms of Spondyloarthritis I seem to have them all, notably bowel inflammation, inflamed eyes and neck pain, intermittent but persistent for the last 3 months. I must raise this with my Rheumatologist when I get back from Australia - which seems to be helping, climate and movement/ exercise.
I have PMR/ GCA/ LVV, I thought the bowel and eye symptoms were steroid side effects. Food for thought. Gosh, I am sorry, it must be a shock.
This sounds very similar, I will mention it to my 3rd Rheumy. He said it is RA. Other two said it was PMR three years ago. I ache pretty much everywhere. Worst area is shoulders, hands and neck. I would welcome just stiffness. A methyl prednisone pack practically eliminated most of the serious pain and was so delightful for my bowels. Eyes are so inflamed or dry I can’t see to drive at times but as a told PMR pro, caster oil is soothing. When I took the last of the metlyl pack week ago everything went to hell again. I got seriously drunk for Christmas to get some relief.. Wife and children cant stand being around me. 40yrs married and worked every freaking day and now she thinks I am just lazy. She never had to work for decades. Blood pressure 160/105 consistently. Can’t get it lower. Forced to go back to work next week when FMLA expires. If I live to see 61, it will be a miracle. I need to just move away and adopt an old dog with arthritis. I am shocked at how apathetic others treat a human in such misery. That to me is the most painful part.
I hope this very relatable bleak mood lifts. I expect they want the old you back. Don’t we all want our old selves back? Your fantasy of the old arthritic dog is very appealing. The prospect of a return to work appalling. The drunken escapade excusable. Your doctors need to try different meds for your blood pressure.
On behalf of my fellow mothers - our work is never done Matthew - you know that deep down. X
Me thinks mom is just going thru withdrawal too. All good things must come to an end. She won’t have me to travel with. She wanted to go to Hawaii for a dream vacation. I asked her, “who is stopping you?” Hopefully this Leflumomide will help in a few months but nothing so far. It’s been a rough three years for both of us I guess. “My Return to work, appalling” not to her.
I think there have been several over the years whose spondyloarthropathy has been diagnosed initially as PMR since the various forms can have a polymyalgic presentation and, as the rheumy has said, the structural changes often do not appear until quite late on.
One lady - not on this forum - from Kent was diagnosed with PMR and later had tongue symptoms that could have been GCA. Even Prof Dasgupta thought it had been GCA, said it was to be managed symptomatically but wouldn't allow enough pred to keep the symptoms under control, In the end she wrote to Prof Mackie in Leeds to ask for help - and Sarah heard her say she had nighttime back pain, it rang a bell and she ordered an MRI. Bingo - ankylosing spondylitis!
What have you been diagnosed with as there are several versions and not all are as bad as ankylosing spondylitis can be. There is a choice of several biologics for it if the usual starter medications don't. Sarah put her straight onto a biologic.
The diagnosis letter just said "spondyloarthritis". I guess I'll find out more when I see consultant in January. I'm assuming I have non radiographic axial spondyloarthritis because a flat xray of my spine appeared to be normal. I don't like the sound of biologics. I believe they can increase the chance of malignant tumours? But if they might prevent further deterioration of the spine I suppose I should at least consider them.
Methotrexate is the usual starter.
The cancer thing was early research which has since been dismissed - RA leads to an increased risk itself. Biologics work.
webmd.com/rheumatoid-arthri...
They've been recommending methotrexate for years but I've declined as I managed to get to only 2mg pred. Maybe it works better for spondyloarthritis and I should succomb!
Is the pred currently managing all you need it to? The advantage of MTX is that it is what is called a DMARD, a disease modifying anti-rheumatic drug and is claimed to reduce the erosion of the joints and the resultant deformation. But it takes months to find out if it works for you and has nasty potential side effects that 2mg pred almost certainly don't.
Yes, that's why I've resisted it. The pred manages everything apart from neck and hip pain. But both of these are tolerable and ease a bit during the day. My inclination is to ask for another mri in a year to establish the rate of deterioration. If the rate is fast I would consider dmards or biologics; otherwise I'd rather stick with the pred. I've no idea if this is the strategy the consultant will suggest!
Hi. I just diagnosed with spondyloarthritis and i start biologic in december. No side effect and i'm starting to live again. I was sick for two year before i got the chance to see a rhumathologist and for me i prefer to be able to walk, work and have fun now. I got side effect from the covid vaccin. Start getting sick 4 hours after. Nobody help or believe me. Had difficulty to breath and walk for a long time. I still think it's bad luck and bad genetic but i still gonna try all medication i can to improve because two months ago. I tough that i'm not going to work and do anything. I'm just 36 years old and i was walking with a cane. I now can walk, run a bit, sleep normal night, get out of my bed normally without help. Will see in the futur for side effect but for now i'm happy....are you gonna stop using tylenol or flu medication? They can also cause side effect in a few people. I just hope that one day they gonna help all exception (the one that wasn't lucky) sooner.
Your experience sounds very similar to my own.
My rheumatologist still suspects spondyloarthritis as my PMR was atypical…I had severe jaw pain and other unusual symptoms. The initial high doses did work wonders though.
She has prescribed Etorocoxib which is an anti inflammatory which does help but I try to manage without it whilst tapering the pred. I’m down to 2.5 pred but my hips and legs and neck and shoulder ache so much especially at night that I have been taking it more often in this cold wet weather.
She says I will have a scan when I’m completely off the pred. She also keeps threatening methotrexate which I’m dreading.
Severe jaw pain isn't "atypical PMR" - it is a suggestion you are somewhere on the spectrum of PMR/LVV/GCA sincce LVV and GCA both commonly lead to jaw claudication. A quite high proportion of PMR patients demonstrate signs of GCA if it is looked for,
I don't know why you have to be completely off the pred. I was on 2.5 when I had my mri and evidently the spondyloarthritis was still visible.
It may be a PET-CT she wants which shows inflammation rather than structural changes.
I didn't realise that. So my mri must have shown structural changes then? I'd assumed the mri showed inflammation too.
An MRI will show inflammation - providing you have had no antiinflammatory medication for a few days beforehand. But mostly it is structural changes that result in a spondyloarthropathy being identified.
I was referred to Leeds by my GP in 2017 as I had classic PMR symptoms but no raised bloods at all. Dr Mackie diagnosed me as non specific spondyloarthropy. MRI was negative also. I'm now settled on pred 9mg reducing once again but very slowly this time. I did have etoricoxib but it didn't work for me so stopped it. I also take tramadol and the combination with pred keeps me working and managing ok, able to do moderate exercise. I think I'm on it long term and am accepting more these days.
Jontie I was misdiagnosed with PMR a couple of years ago. Went to see my rheumy and rediagnosed with axial and peripheral spondyloarthropathy. He took me off pred because he said sometimes it lasts only a few weeks. That wasn't the case, so he put me on Hydroxychloroquine, which is apparently a mild drug which calms the system (his words). That didn't work on its own, so went on to that plus 5mg pred. Have been OK since then, with one or two ups and downs when trying to reduce unsuccessfully. Rheumy has threatened Methotrexate more than once, but he says that as long as I can manage on 5mg pred then it is safer for me to keep with that rather than go to mtx. I did a very, very slow taper from 5mg to 4mg a few months ago. It didn't work and I had difficulty in deciding whether the pains that I got were due to the pred being too low for my condition, or whether it was OA. However I was definitely having a flare of some sort because ESR went up to 22. I went back to 5mg pred and my bloods became normal but the pains didn't go. I then had an mri of cervical spine, which showed lots of wear and tear but no inflammation. So currently I am staying at 5mg for 3 months, then slow taper of Hydroxy from 300mg to 200mg, then another 3 months at 5mg pred, followed by another attempt to taper to 4mg. He says at my age (68) he would prefer me to get a little bit lower than 5mg. For info, my early pains were right hip and bilateral arm/shoulder pain for 2 months, which disappeared of its own accord. I was left with (horrible) permanent headache in the middle of my skull, varying between front and back (he says this was from neck), fatigue, buttock, neck and shoulder pain. Pred has mostly taken care of this. I hope that this is helpful to you and that you can settle on a course of treatment that helps. All the best.
Thank you for taking the trouble to reply in such detail. Everyone has provided very helpful information. My appointment with the rheumy is 16th January. He's planning to tell me about treatment options. I'll feedback here.
I promised to provide a bit of feedback having seen the consultant. He says non radiographic axial spondyloarthritis was confirmed by the mri (despite ne being on 2.5 pred at the time. He stronly recommended a biologic called adalimumab. I said I am fine on 2mg pred so why change and he said I should be comimg off the pred after 7 years and that the biologic was more nuanced. His analogy was pred being like a sledgehammer and the biologic a scalpal. I am sure many will disagree with this as I know that a lot of people are quite happy on long term low dose pred (including me). He seemed so sure about the advantage of adalimumab in my case that I suppose I will give it a try - although the prospect of self injecting the stuff every fortnight is unappealing! One thing I didnt understand was that he said the main side effect was vulnerability to infection. Given that he described pred as a sledgehammer I'd have thought the vulnerability to infection with pred was greater - However, that does not appear to be the case. Oh well...
I truly DON'T get that concept if you are fine at 2mg pred on its own. Not sure if adalimubab stops disease progression but they all stop working to some extent eventually which is why they usually keep the big guns for when they are needed. And 2mg pred isn't making you particularly vulnerable to infection. That said - I inject tocilizumab weekly, you get used to it, and I don't think it makes me get more infections. But that was to get me off nearly 20mg pred. No-one would have turned a hair at 2mg and left it at that rather than add such a heavy-duty option.
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