I am moving into my 4th year of PMR. I am off prednisone and have been for about 3 months.
I am left with costachondritis. I believe this is a common side effect of arthritic conditions. I am taking brufen twice a day to help this and general stiffness. It’s Definately not PMR as first in the morning I am okay if I forget to take brufen by 12 midday by the evening I am very stiff but brufen addresses this.
I know that we are told that pred masks OA etc. But I am 55 so wasn’t expecting this to be such an issue so soon...
I know people think getting off pred is the end but is this just the next phase of recovery that we don’t talk about?
Would be good to know others experience in this next phase of recovery as coming of pred is not the end! Well certainly not for me.... I am even questioning if I have never really had PMR or some other arthritic condition of which I am told there are a number😀
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JulieR2
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Hi Julie. That’s really interesting that you have costachondritis as I too have been suffering with it for the last few months and am also just coming to the end of my 4th year with PMR. Not off pred yet though, down to 4mg ready to drop further but feeling the best I have for many years. Almost feel normal!I do have steroid induced osteoporosis though so that’s the next thing to deal with 😞
Doc told me the PMR would last about a year, what a joke. Only when I joined here did I learn the truth.
Would be really interested in replies to this, I am currently on 1mg of steroids. Am lucky have had no flares so far and latest blood tests show no sign of pmr but my feeling is that I won’t suddenly feel better when I take the last tablet and full recovery from what has been at times a really difficult condition will take time. Have telephone appt with physio on 1st December but not sure how helpful that will be. Any advice , thoughts gratefully received
I’ve been off Pred for4 years now (had GCA only), and probably the first 6 months or so if that was my body adjusting back to normal - whatever that may be!
I never had costachondritis, but I did notice at lower levels of Pred my osteoarthritis pains did resurface. ....and I say resurface deliberative because I had OA before GCA.
Since remission, have got on with life...if fact rarely think about GCA (apart from sight issues caused by late diagnosis).
My GP once told me, many moons ago, that most people over the age of 50 have arthritis, it’s a fact of life, for some it causes an issues, for others it doesn’t.
In my very early days on the forums a lady in Cambridgeshire was being told by her GP she wouldn't qualify for a hip replacement at 60, you had to be 80 and that she'd have to be off pred first! We encouraged her to be proactive and she contacted a few privately - some would operate on a moderate dose of pred, others not. She saw one privately and he put her straight on his NHS list as a priority. So much for not old enough! The assessment is made on need - because you may be young but unable to walk without pain that stops exercise of any sort. And the fitter you are otherwise when it is done, the better the post-op recovery is likely to be.
🌸 meant don’t think about my GCA, but others - yes I do, and very happy to - just repaying the help I got early days after diagnosis. Just wish I’d known about charity/forum earlier...but ‘tis what it is.
PMR is not an arthritic condition, it is an inflammation of the arteries as is GCA and other forms of Vasculitis. Costochondritis is an inflammation of the cartilage that joins the ribs to the breastbone. Have you been diagnosed with Osteoarthritis? Costochondritis can be caused by all sorts of things such as carrying heavy shopping. It is not known what the actual source is. It is not linked with arthritis. Certain muscle weakening that occurs with PMR could make us more prone to it. The muscle weakness will recover with care and gentle exercise. You should be your old self in about a year. Take care though, you have had a very nasty disease that has hopefully gone completely. Watch your stomach with none steroidal anti-inflammatories.
Hi Jane no I haven’t been diagnosed with OA and I did get a dexa scan in June. I was lead to believe that not all rheumatology conditions are arthritic but some others like PMR are inflammatory and that my rheumatologists view. He said I could have had any one of these. All treated more or less the same way! I stuck with PMR as the other option I was offered had a direct impact on the heart. I will find my letter as I can’t remember the name! Others may be able to prompt me. I tried to remove that one from my memory as when I read the affects I decided to stick with PMR😃 I paid privately to see the rheumatologist who was supposed to be an expert in the wider range of rheumatology conditions! But who knows😀
Costochondritis can pop up for no obvious reason.I had it for about 18 months after my cancer treatments finished back in 2005 and not had problems since, but if you poke the area it’s tender. The problem with both PMR/GCA, the musculoskeletal system has been weakened both by the vasculitis, Pred and deconditioning. I am also convinced that sometimes in trying to keep going with life we might be setting up problems with over using parts that really don’t want it. However, the alternative of sitting and doing nothing would be injurious in other ways. So basically, we have been through trauma, dealt with it as best we can but there will be a fallout. I started with this at 54 and at nearly 58 and on no Pred and I don’t recognise my body. I’ve been through a systemically traumatic experience so the end of Pred isn’t the end of the journey.
Most people I know seem to have found it takes 6 to 12 months to feel "right" - you do have to remember there must be some degree of loss of fitness over the years for most of us and you are 3 years older. It isn't long - but as we age things do start to happen suddenly because we compensate for a while and then suddenly don't.
Like many of the others I had costochondritis although it was years before I knew that's what it was. I don't think it was really helped by pred except in the first couple of months when I was at my highest dose. However it has gradually gone away. The chest thing happened in 2013, because in early 2014 I asked my doctor about it. I'd been doing some yoga and felt a crack in my sternum. Later it happened again and this time it caused pain. Dr thought I'd dislocated a rib (or something like that) and that was that. He retired a month later, literally a week before I broke my leg, and within three months of that I was definitely developing PMR symptoms although not diagnosed until the middle of 2015. Was that chest snap the real beginning of PMR? And is the fact that I haven't been troubled by it for a long time a sign that PMR really is going into remission?
With regard to OA - I was diagnosed when I was 40, but I think I already had it in my neck and feet before that. I was diagnosed on the basis of knuckles of my hands getting enlarged. All this and more confirmed by x-rays.
I have been off pred for 9 months now. I had CRP checked recently which was <4, but I still have some aches and pain around pelvic girdle. It might be OA that pred was masking, but as it’s bilateral I suspect it is a legacy of PMR. I don’t believe you fully recover as the inflammation of PMR probably causes some lasting damage. I have considered going back to a maintenance dose of say 1mg a day as that presents far less risk than was once believed- haven’t done so yet as it feels like a backward step.
Have you considered a back pod to help with costachondritis?
I had GCA only, reduced/returned to work too swiftly (bouyed by pred?), couple of flares, then reduced but also on MTX. Came off pred in July (3 Yr point) and off MTX end October, so whole performance lasted just under 4 years. I am really struggling with general aches and pains but have put that down to nearly 4 years no 'active' living and fact I have just turned 60 so perhaps my earlier life catching up with me. GP suggested it might take 2+ years to get back to normal and I think I now know what he was talking about, but am frustrated by lack of real progress, lost job and cannot find work (even volunteering off cards at present because I am 'clinically extremely vulnerable' so noone prepared to let me in), and headaches permanently - which do not appear to be gca related though crp and esr remain higher than my 'normal'.So what does it all mean: assess I am older, need to build back strength gradually, accept work situation till I can find opening in recession hit Britain, and disciplined way to online learning and some reskilling. None of this is easy but it did take a very long time to sink in that I had been so unwell!! I think you are doing well but anticipate you are hugely frustrated by 'missing' years and just not being able to carry on as normal, but I wish you best of luck recognising where you have really got to and making a plan for the future. Mark
Sounds like you have had a really tough time Mark. I have managed to work throughout my journey. But it seems to be getting harder. I think I may have something else going on. I am taking 800mg twice a day of brufen to keep myself moving. One of the things the rheumatologist questioned was seronegative RA. I hope something turns up work wise for you. Will let you know how I do. Am going to give it until the new year and then go back to my GP.
Thank you Julie and Constance. Just seems that having got through gca, then off the meds, cannot just get back on the magic roundabout. Have strong network, including many ex colleagues keeping in touch, but work threshold may be too much for body that is not so strong yet. Mark
Hello Julie;
It's a year since the last post on this thread so I suspect this may go unread but it's cathartic to write this down , so I will ..
I hear you on wondering if you actually have PMR or not..
I was diagnosed with PMR in fall 2019 after some duration of shoulder girdle and neck pain and stiffness that I can no longer remember, certainly it was months. I was put on 10mg prednisone and it is a wonderdrug.. The relief was immediate, CRP level dropped to normal quickly and the discomfort was reduced overnight . You can literally map the reduction of pain and stiffness to the use of that drug.. That, coupled with the understanding that PMR was self limiting had me quite giddy for a return to normal..
That was 2 1/2 yrs ago and 3 rounds of prednisone later I'm still in pain and stiff.. It hasn't fixed me and despite the relief noted above, it never ever did anything to fix the sharp pain I was experiencing in my sternum.. Couldn't sneeze , cough or blow my nose without crying. I have actually learned to effectively stifle sneezes .. Kept saying to the doctor while on prednisone " it's great, my CRP is down to normal and I feel good, let's start weaning off this stuff, ..... but you know, oddly enough my chest pain is undiminished, and that's weird isnt it"... So I was hooked up with a specialist who said my chest isn't PMR and called it Costochondritis.. Great.. PMR and Costo, but whew, they are both self limiting so it won't be for ever...
So here we are 3 years into this. At least 2 conditions diagnosed, both self limiting but both still here.. Stiff and in pain, can barely tie my shoes or cut my toenails, rolling around in bed is painful , getting out of bed is something you brace for. Drive for an hour and get out of the truck like a 100 yr old man. Physical work while itself still doable, exacts it's price when you stop for a while. It's limiting all right , but self limiting? ... not yet
So yeah, I am also wondering if I truly have PMR or something else, or a few things all together combined with 60 yrs of using this body. Or I got long Covid in 2019 before it was popular, or I've got arthritis and we just haven't determined that yet ..or..or..or..or..or
At the end of the day it doesn't matter what label is on it, just want it to go away......
You sound as if whoever is managing you has little idea about the true nature of PMR. It is a chronic disorder - and while for the vast majority of patients it IS self-limiting, that doesn't mean it is done and dusted in a few months,
Only about a third of patients get off pred in under 2 years - the median duration of pred management was assessed on one study as just under 6 years. You don't take a course of pred and stop, you don't reduce the dose relentlessly to zero. You taper in small steps in a process called titration to find the lowest effective dose - which does tend to fall as time goes on but you do reach a plateau for long term management. That may be 10mg, it may be 5mg , it may be 1 or 2mg if you are lucky, or somewhere in between. And it is likely for most to take 4 or 5 years to get off pred altogether without the inflammation buildling up again.
Slowly it is being realised that PMR comes in various shapes and sizes, it isn't a one size fits all. I reckon there are at least 4, maybe 5 different presentations of PMR. MS is acknowledged to come in 3 clear versions - why not the same with PMR?
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Pulled a muscle (Touch Rugby), taking a long time to recover.....normal ? 
Are there people with PMR who choose not to take pred?
Long story, not to young it turns out!
Is my inflammation under control? How to know?
Pain in my hands since, possibly, reaching 0mg Pred
